Saturday, April 30, 2011

We spent today at Legoland. Another place where Riley was in his element. He enjoyed just about everything about the park. Both boys are crazy about Legos, but I would say that Riley's fascination is a lot stronger than Quinn's. He's been hanging onto his money to spend on new Pirates of the Caribbean Lego sets-he bought two sets this trip.
We were waiting for Kevin and Quinn to ride the log ride and happened upon this shark. Riley looks content in this picture even if he's being eaten by a shark.
They have giant displays of the Pharaoh's Quest Legos!

The highlight of the trip was the new Star Wars display in Miniland USA. I have to say that the displays were pretty cool, especially this Millennium Falcon!

I really like going on outings to amusement type places. We can send Riley off to get his own food or drinks, pay for souvenirs, or find a bathroom, and we don't have to worry that he'll get lost. It's good experience for him to have to talk to strangers in order to get what he wants.

Thursday, April 28, 2011

Feeding the Obsession

I think I have mentioned that Riley has had and has obsessions. One of the latest, and longest is Disney. Anything related to Disney parks. He is a wealth of information. We surprised both boys with a trip to Disneyland before we go to Legoland. Riley is in his element. He is super happy. I miss the super happy Riley. He has been a little critical of his brother though, because Quinn is not up on all of the Disney information, and that has caused a few cross words and a few serious scoldings. Riley does not get that Quinn does not know as much about Disney as Riley does, and he's not very patient about it either. Other than that, he is having a blast!
We rode the Monorail today, to Downtown Disney. We had just missed one because we were taking pictures, so we were first to get up to the platform. I asked if we could ride in the front of the Monorail. For those of you who are not Disney geeks, you can ride in the front, with the driver, you just have to ask them. We got lucky and got the front. Riley LOVES to ride in the front. You get an awesome view.
Both boys love Big Thunder Mountain. Riley pointed out the hidden Mickeys to Quinn. He pointed out Hidden Mickeys to all of us, on just about every ride we rode!

Kevin, Quinn and Riley in line for the Matterhorn. Riley loves that one too-oh and there's a hidden Mickey!

Things I observed about Riley today: the cast members will ask questions of guests, favorite ride, where are you from etc. Riley will always look to Quinn first and then might answer the question, or he might not. He gives short answers or agrees with Quinn. The cast member loading riders at the Monsters Inc ride asked Riley about his shirt-had he ridden Everest? (Expedition Everest is a ride at Disney's Animal Kingdom, in Florida). Riley did answer that time, and offered a few more words than usual. He really likes that ride thought, so he feels more confident answering questions about it. Opinion type questions are hard for him. He won't commit to his feelings toward something, especially if a decision is involved. Riley also had a small conversation about his hat, with a woman (tourist) in a gift shop. He was answering her question about where he got it (she liked it and wanted one for her nephew), but she didn't get what he was saying-we got the hat in ToonTown inside Disneyland, which if someone is new to the park, may not necessarily know about. I stepped in and explained it to her, and then found it for her in the gift shop that we were in. He did not make eye contact with her once.

Monday, April 25, 2011

Sleeping?

I cleaned Quinn's room today. I need to get into Riley's and do the same thing, but Quinn's room was such a mess and it took me all day. I don't know if I have the energy to tackle another room tomorrow even though Riley's room is a lot cleaner.

The boys were playing with the Star Wars figures this evening, in Quinn's clean room.

We are conducting an experiment tonight. When Kevin and I went to the Autism symposium a couple of weeks back, there was a doctor who discussed sleep issues in kids with Autism. Kevin and I have had concerns about how well Riley really sleeps at night. It takes him a LONG time to fall asleep, and I am not sure he sleeps peacefully once he is asleep. I know he can sometimes freak out if he awakens in the middle of the night and can't go back to sleep. His room backs up to our family room, and we can hear him tossing and turning and thumping against the wall at night. In fact last night he was awake at 1 am, when I finally went to bed. We would really like the boys to swap rooms, because Quinn can sleep through anything, and is asleep as soon as his head hits the pillow. Riley tosses and turns and is awake a long time before finally going to sleep-we think the TV bothers him, even if the volume is down. He is resistant to switch rooms though. He likes his space and is concerned about the amount of light Quinn's room gets in the mornings. So we decided to experiment. We'll have Riley sleep in Quinn's bed and Quinn sleep in Riley's bed and see how it goes. If it goes well, we will swap their rooms-a huge job, but will be worth it in the end if Riley can get a decent night's sleep. He does so much better during the day when he's not tired.

Sunday, April 24, 2011

Rigidity

Happy Easter everyone!

Riley loves to be in the pool. I wish we had a community pool in our neighborhood. I would be all over taking both boys to the pool in the summer. We don't have many options, but I am going to do some research.

Today we got a good look at the rigidity that comes along with Autism Spectrum Disorders. Riley loves to be in the pool. He loves to bob up and down, go under water and jump in from the shallow end. He can swim, but he wants to do it his way, all the time. He's not a strong swimmer, but at lessons last summer he was able to swim the length of the pool. To advance in Scouts, he has to complete a swimming requirement. Kevin decided today would be the day to do it, and he would video tape the event to show the Scout leader. Easier said than done. The requirement involved him jumping into the deep end (of 5 1/2 feet), and swimming the length of the pool. Lots of complaining (and a few tears) from Riley: "I can't swim that good" "I don't want to" "It's too deep to jump into" etc. LOTS of negotiations from Kevin and I. I finally gave up, but Kevin persisted. I guess he eventually told him that we could maybe stick in a little trip to Disneyland when we head for Legoland on Wednesday. We ARE going to Disneyland, but it's supposed to be a surprise, and has been part of the plan all along. He got into the pool and did it right away at that. Sort of. Once Kevin released him to play in the pool, he was happy as a clam, and JUMPING into the shallow end of the pool. His way.

I am happy that he has some swimming skills-although he's nowhere near my nieces who are super comfortable in the water, and good swimmers. It's taken a LONG time to get Riley into the water to learn to swim because he was always so scared of the water. Because he was so hesitant, Quinn has been hesitant. Quinn's skills are better though, but he's so small, he can't touch the bottom of pools almost anywhere. Both boys will be back in the water for lessons this summer. I have finally found a place that actually teaches arm strokes, something we have never had at Happy Fish or Fremont Swim School-both local, popular places. It's been just expensive splashing around in the water, blowing bubbles for us at those locations. This new place, Calphin, is awesome though, and both boys have learned arm strokes. I will sign them up for the summer sessions.

Friday, April 22, 2011

First Day of Spring Break

We are on spring break! Riley is a much different kid without the stress of school. He slept in (he was the only one able to this morning), and was pretty happy all day, in his pajamas. I really hate that school keeps him so stressed out all the time.
These are the Egyptian Lego sets that Riley got for his birthday.

I like this guy!

It was a nice day of limited fighting, some TV watching (Ghost Adventures), Lego playing and Wii playing, oh and piano practice. I could get used to this!

Wednesday, April 20, 2011

Homework Frustrations

Sorry I don't have a picture for you today. It's been a busy, frustrating day. Riley had one last project to finish for tomorrow, and he also had his regular therapy appointment and Quinn had a baseball game. Kevin had something at work to attend, so I asked my mom to help me shuttle kids about town. She met us at Riley's therapist's office and took Quinn to his game. I waited for Riley and then had to drive him all the way back home so that he could finish his project. I then turned around and went to Quinn's baseball game, leaving Riley to work on his project until Kevin could get home and oversee it.

I found out today that Riley has not been turning in his English homework. He does the damn homework every frickin' night! We make sure to check his agenda, and check that he has done the homework for ALL of his classes. It is always done-we make sure of it. We then make sure he puts the items into the correct folders and then into his backpack, ready for school. I then remind him and remind him of it. We do this every night. Imagine my surprise when I looked in his English folder today and found at least a week's worth of completed English homework! I asked Riley about it, but he couldn't recall if he turned it in or not, so I emailed the teacher. Nope, he hasn't turned it in. Crap. Again we reviewed the procedures for turning in homework. All he has to do is come in the classroom, take the homework out, and put it on his desk. Then he is to copy down the next night's homework, as the teacher collects it. He forgets to take it out-and this is where you can really see the disorder. It does NOT occur to him to do what the other kids are doing. Example, kids will see what they are supposed to do, based on what the other kids are doing, and they will get what is needed-even my 2nd graders can do this. Riley's brain doesn't work that way. It never occurs to him to look at what the other kids are doing because he's so focussed in his world. It is so very frustrating! How am I supposed to get it through to him that he needs to get the homework out and TURN it IN! It's crazy! He spends the time doing the homework, and redoing it if we think he needs to make adjustments, so why isn't he turning it in???? He is losing a privilege for this. I wonder when he will care about his school work? IF he will care? I told him tonight that his dad and I are working very hard to help him out, but that he has to do his part by turning the damn homework IN! Just maddening.

Also frustrating me today? The fact that Riley is so mean to Quinn. I was still angry about the homework, so I unleashed on him today, after he had Quinn in tears. I am sick of the mean things he says to Quinn, and the tone of voice he uses. I understand that Quinn is the one person in the world that Riley can stand up to, but I can't have Quinn growing up thinking Riley was the meanest brother around. I know I have to handle it, but I am searching for ways. Quinn had a rough day at school today, and Riley just kept at him and kept at him until he finally got Quinn to cry. Last week Quinn got so mad at Riley that he didn't want to even sit near him, or be around him. It's got to be so frustrating for Quinn, and I so want to help him understand. If I could ever get Riley in for proper testing, perhaps someone would be able to HELP ME with these issues!

I'm done bitching now. Thanks. Tomorrow is a new day, and spring break starts on Friday. We are all just so very tired.

Tuesday, April 19, 2011

Projects and Lego

Riley is in project hell this week-science paper and history paper. Poor guy. He's not getting much free time, but he's handling it very well. The science paper is due tomorrow. He's finally finished, and I think it's really good. I don't have a clue what the science teacher will say about it, but he tried really hard, followed her "check list," and got it done. We are less concerned with the history paper. He's got that one completely under control. Riley knows that come Thursday night though, he can do what he wants, when he wants, for an entire week and a day! I can too! We have some travels planned as well.
In between projects, Riley built his Rockefeller Center-a birthday gift from his aunt, uncle and cousins. He loves it. Lego has quite a few of these architecture sets. Riley loves them.

We will be visiting NY this summer, after our DC trip. Rockefeller Center is on the list of places to go as they have Nintendo World-and also a relatively new Lego store (as Riley texted me this afternoon). Don't you love the gold "statue" in the middle where the ice skating rink is? So cute! Riley loves him some Lego. He got some cool Egyptian sets too. I'll take pictures of those tomorrow.

Riley informed me this evening that his recorder class is playing the Star Spangled Banner tomorrow for the entire school! Way to go!

Monday, April 18, 2011

A Party At Last

On Sunday we were finally able to have Riley's birthday party. We had to reschedule it because in March when it was scheduled, both boys were sick. Riley was very upset that we had to postpone the party, and he'd been quite nervous that he might get sick again for the rescheduled party. Nobody was sick, so it was all good!
My friend made the Lego cake this time! It was yummy!
The guests at the laser tag place.
Riley, intently playing a car racing game.
Getting ready to light the candles.
Lighting the candles and singing. We had pizza for dinner.

Riley and his friend Brendan. This is the friend who moved away on him. He got to see him two weekends in a row!

Riley had a great time playing laser tag and hanging out with his friends. I quite enjoyed the amount of TALKING he did with his friends. They were all quite chatty with each other-of course it was ALL about Pokemon and video games and gaming systems. ALL of IT, all the way to the laser tag place which is in a city about 20 minutes away. At least they are passionate about their games. It was awesome to see Riley so engaged. A good time was had by all, and I must say that laser tag is pretty darn fun. I shot the heck out of this little stripey soccer player kid!

Friday, April 15, 2011

Progress Check

We may be making some progress. Report cards came home today from the Junior High. Riley did ok (except for math, which he could do better in, if the teacher actually taught-go figure). The PE teacher gave Riley a solid C, which we were happy with, especially in light of the progress note he sent home for an F! He did put that Riley had good effort and achievement. I think he gets it, and I think he is understanding of Riley's situation. Example: The other day Kevin had to go to school and pick Riley up. He had a horrible headache, and it sort of came to a head (no pun intended) during PE exercises. Riley stopped exercising and the teacher asked him what was wrong and he said his head really hurt. He asked no other questions, told him to get dressed and go to the office. The secretary called me to tell me Riley was in there with a really bad headache and what should she do? I asked her how he was handling it. She said she couldn't really get a straight answer out of him, but that he was rather uncomfortable. Now, everything that hurts Riley has him convinced that he is dying, so we never know if things really hurt, or just sort of hurt. Riley has no patience for pain, so we opted to have Kevin go ahead and pick him up-it was 2:00 and school got out at 2:18, so he wasn't missing much. It was easier than having the mini meltdown if he had to stay, and then had to walk home. Because we are trying to limit the amount of crying he does at school (which has been limited to only two incidents this entire school year, an improvement), Kevin picked him up. Crying in Junior High is like social suicide. The secretary was great about it-very understanding, and we had a good laugh about the drama of it all. The office staff there is truly awesome.

This was taken last spring break, at Scheels in Reno.


Thursday, April 14, 2011

Feeling Frustration

I can tell when Riley is tired. He is so very tired these days. School is just beating him up this year. He's very frustrated with the work load and with the other kids. When he's tired, he tends to be a lot more emotional. He's beside himself tonight about the video game he's been playing. Even when he's doing things that are meant to "unwind" him from the day's frustrations, he gets frustrated. This frustration is also expressed towards his brother as well. I really really really need to figure out what to do about that, how to make it better for Quinn's sake. I wish I had a magic wand that could help Riley cope better, but I don't, and the teaching of these social skills and coping skills is a slow process.
Riley is a brand new 7th grader in this picture. He looks so young, and fresh. We are just trying to get through the rest of this week and next, and then we have spring break. He needs the break to regroup and then be able to finish out the rest of the school year.

This was taken the summer before last. I love this picture. It's a completely relaxed Riley, enjoying his summer break-we were with my parents on an RV trip. This picture was taken in Oklahoma at an RV park-a nice, new one. He loves the pool. He never really used to, was always afraid, but the last few summers he's been willing to take lessons so that he can be in the water. Mostly he likes to bob up and down, but last summer he made great progress with swimming, and can now do actual strokes and swim the length of the pool. Most kids have already learned to swim by this age, but it took us so long to get him comfortable in the water, and to get him to WANT to learn to swim. Better late than never right?

Riley's been complaining about what other kids are saying to him (again). I find this so very frustrating. He can't just let it roll off his back. He can't ignore them-it's hurtful to him and he's sure everyone hates him, and he always has to say something back, something logical. We talk about it constantly, giving him things to say in response to them, because he has to say something. He's very logical, so when they say he's short (which they do a lot), his response is the same, "I'm not THAT short," which really doesn't put the other kid in his place, but makes them say more, because he can't compete with their sophisticated ways. Right now, I am not doing anything, other than talking to him. I really can't keep fighting his battles, and this doesn't sound like true bullying to me. Sounds like normal kids saying stuff to each other. I don't know. Part of me wants to email the counselor and let her know, but part of me also wants him to learn to fight back. I can't protect him from mean people forever, they really are everywhere. It is so painful though, and I am torn. I just wish kids could be kind to one another. I will keep giving him "lines" to use with those kids, and I will step in if needed. I am so worried that he will eventually stop trying to fight back, and just learn to take it. I do not want that. It's a good thing we are going forward with the endocrinologist. Maybe we'll have some answers about his growth issues soon. We are still awaiting test results.

Future Elton John?

Here's some video of Riley playing his keyboard. He is playing the theme song to Jurassic Park in this video, and at this time, he'd only had a few piano lessons. He's had a total of 5 lessons now, and he's playing like crazy. He comes home from school, from his recorder class, with a new song meant for his recorder, and he immediately plays it on the keyboard. He's happy to have the notes for "It's a Small World." I'll have to video him playing that one. Oh and pretty soon his teacher is going to give the kids the them to Super Mario Bros. He is PSYCHED for that one!
video

Tuesday, April 12, 2011

Neurologically Intact Brains

Learning more about Autism Spectrum Disorders has caused me to think. A lot. Lately I have been thinking about behavior-maybe because I deal with such badly behaved children (not my own) all day long. Kids who are "neurologically intact," who have the ability to make wise, appropriate choices but who don't always make wise, appropriate choices. But then I think about it in terms of "normal" bad behavior vs. "Autistic like" behaviors. Riley doesn't have any behavior issues. He has quirks, but they are nothing that anyone could consider as behaving badly, just ways of coping that are different than others. He certainly wouldn't even think about saying something mean to another person (his brother excluded). He hasn't been busted at school for talking non-stop to his neighbor-most likely because he's a man of few words, and has social issues. He's never had to sit as an "island." If his teacher told him to do something, he wouldn't argue. You wouldn't find him under his desk or crawling along the floor to get to lunch. He wouldn't touch people as he walks by them, or tell them he won't be their friend, or step on oranges, or squirt drinks, or use his water bottle inappropriately, or color himself blue. He may have "Autistic like" quirks, but his behavior is way more appropriate then a lot of "neurologically intact" kids.

Case in point. This student (the same one who colored himself blue last week), has glued MY tissue paper squares to his pencil box. Why? Well he wanted to of course. Oh and this same student, crawled to line up for lunch today, and was on the floor under his desk at another point today. He is "neurologically intact." I rest my case.

Monday, April 11, 2011

Finished

Riley got his homework finished before 5 pm tonight! That's a first. It usually takes him so long to do it-not because he can't, but because he just won't stop watching Youtube videos and get it done. Apparently he got the math homework done in class. Seriously, when does this woman actually teach math??? They start their homework every day, and she tells them that they shouldn't have homework because they can get it done in class. Um, then it's not homework. It's class work. He had to print out an article about plants for his science class-hopefully he chose wisely with his article. He had the standard paragraph response for his English class, which he usually finishes quickly. That left history-he had the second part of his project to finish. He was quite pleased with himself, and had lots of time to play the Wii and fight with his brother.
Here's the second part of Riley's history project. It's a web chart. He picked the pictures to print out, and came up with the facts himself. He needed four facts under each category. He did a good job with it. I could tell he was interested in it by the extent of his work. When he's interested, he spends more time. If he doesn't see the value or interest in something, he won't put in the extra. That's when Kevin and I have to step in and make him redo stuff. This project looks good!

I noticed the Lego Marios and other characters on Riley's shelf tonight, mixed in with his travel souvenirs. Both boys love to look at tutorials on the internet, and then build things with their Legos. Good thing we have plans to take these boys to Legoland for Spring Break!

Sunday, April 10, 2011

What Fun!

Riley got to spend some time today with one of his friends. He was super excited because this particular friend moved away. He and his family don't live far, so we plan to let the boys remain in touch. I don't have a picture of them together, but according to the other mom, it was non-stop Pokemon talking in the car! She has two boys too, so I am sure she's used to the "boy" speak. I try to stay in the conversation, but I get lost. It just doesn't hold my attention-imagine that. They went to see the movie Hop, and then had lunch after. He had a really good time.

Riley got most of the pieces of his History project done. He has a few things left to do, that won't take him long-or shouldn't take him long. The one part due tomorrow is complete though. He got to spend some time playing Wii with his brother this afternoon.

So Riley has this obsession with Disney. Our dinner conversation tonight (at Chevy's for the baseball fundraiser night) consisted of Disney talk. He likes to ask us questions like: What is your favorite ride at Disneyland that's been in the park since it opened? Well, that's an easy one for him-he knows all that stuff, but the rest of us have to think about it. Kevin can always come up with an answer (he knows this stuff too), and I can usually get by, but Quinn (being 9 years old, and not Disney obsessed), never can. It frustrates Riley to no end. We keep telling him that Quinn doesn't know all that Riley does, but it's lost on him. If you don't share his interests, then he gets a bit upset. I feel badly for Quinn, who really has to deal with a lot in terms of Riley. He's pretty easy going though, except when it comes to food. He's been VERY vocal lately that he "can't take it anymore," when the foods he wants to eat have been already eaten by Riley, who seems to not understand portion control lately. We now have to monitor everything, and how much of it, he eats. He will eat us out of house and home!

Saturday, April 9, 2011

Projects, Nominations and Friends

Riley has a project due for history. It's due in parts, 6 parts I believe. We were able to talk him into getting one part done for sure, and then starting the next one. He also had some math to do today, so he got that done as well. I hate making him work on the weekends, but there are things that have to be done.

Riley came home from school yesterday with a paper from his PE teacher. It is a nomination to the Web program at Riley's school. It's a leadership program for 8th graders. Their job is to help the 7th graders. I am not sure it's something Riley will feel comfortable doing, but it was a really nice gesture from his PE teacher. Kevin and I feel strongly that he give it a try-it may help build his self confidence, and force him to talk to others. We'll let him make the decision in the end though. I think the PE teacher was thinking the same thing, that it would help with his confidence and build on his social skills. It makes me very happy that the teacher thought of Riley for the role. Only 5 kids (from that class at least) got nominations. We will look at the required dates and see if they work with our summer schedule, and then let Riley make the ultimate decision.

My friend Valerie (seen above, clapping) texted me this picture today. Isn't it cute? That's Riley in the red shirt. Her son, Cody, is behind him, in the overalls. I believe this was at her son's first birthday party-looks like Gymboree, and it looks like we are under a parachute. Cody is 13 on Monday. Valerie and I (and two other moms) have been friends since our oldest kids were around 6 weeks of age. We met at Mommy & Me. Cody is the last one to turn 13 of the group. Time just flies. Oh, do you like our giant video camera? That's Kevin taking video and me, next to him.

Friday, April 8, 2011

Wow!

Poor Riley has had a rough week. He's tired, and the week's been dramatic. He even fell asleep for a little while today, after school! When he woke up this morning, he was complaining (a lot) that his legs hurt. I had no idea why his legs hurt, but he had to go to school. I also discovered that he didn't complete two pieces of his History homework, so I pestered him to complete that. He was not a happy camper between the finishing of homework, the sore legs, and the lab events of yesterday, which still irritate him if you ask him about it. When his carpool arrived this morning, and took him to school, the mom sent me a text saying Riley was upset. I responded that I knew he was, his legs hurt, and we gave him Tylenol. She then texted that he told her that his parents "forced him to go to school." Forced. I had to laugh. I texted back that indeed I did "force" my child to go to school this morning. I think we both had a good laugh about that this morning. He's so dramatic. So after school I asked Riley if his legs still hurt. He said they did. It's hard to tell with Riley just how much something hurts him because he thinks everything is killing him. The legs still hurt. Come to find out, they did some sort of aerobic activity in PE yesterday-Riley's exact words were, "long, strange exercises, which were not fun." He said it was called the Insanity Workout. Oh. Everything is clear. He exercised and is sore. LOL. I am glad I "forced" him to go to school then.
Riley at piano tonight. He sure is loving it. Look, teeth in the picture! We have to prompt him to smile showing teeth.

Here's the proof of his love for piano-more teeth! Riley has already completed Beginner Primer A in piano-apparently the fastest any of his teacher's students! He's had 5 lessons. He came right home and started practicing, playing the Wheel of Fortune theme song.

I am so proud of him! I am also so happy that we have finally found something for him to do so that he can feel success! Watch out people, he's the next Elton John!

Thursday, April 7, 2011

Obsessions

At dinner tonight, Riley was quite chatty. He's usually pretty quiet, a man of few words, but tonight he was especially chatty. We went to Fresh Choice for dinner. He talked the entire time about Disney. It is his latest, longest obsession. That got me thinking to all of the obsessions he's had over the years: diggers (construction vehicles), makes/models of cars, states/capitals, letters, Titanic, Pirates of the Caribbean, Indiana Jones, Star Wars, and now Disney, plus Super Mario/Pokemon video games, Youtube videos and Wikipedia. The Disney obsession has been the longest though. He reads something Disney related every day (but then again, I think his Dad does too). I think we are all Disney geeks in this house though, so it's natural. We feed the obsession. Oh well, he enjoys it, and who am I to deny him that?
Riley had to create a game-or he chose to, or something like that. He created a Disney game. I think he was in 1st grade.
We've been to Disneyland a jillion times. This is from our trip for the 50th anniversary. Can you see that Riley's missing his two front teeth? Adorable.

Yet another trip-or it could be the same trip. We've got tons of pictures of our kids at Disneyland. Like I said, we are Disney geeks.

Riley went to the lab this morning. He survived. He was already upset when he and Kevin left this morning. I knew he didn't want to do it. I guess the complaints were abundant, all the way there, and during. The same nice lady from three weeks ago was there, and it sounds like she put him ahead of others this morning (as she did three weeks ago). Did I tell you about that? His pediatrician wanted blood work, so we went three weeks ago. My mom went with me. It was not fun. Riley nearly passed out. I just stood there and cried. Luckily my mom was there with me. So today there was some freaking out too, but it was over quickly, and he didn't pass out. The lab opened at 7:15 and when I texted Kevin, at 7:30, they were already done. Riley got chocolate donuts and Gatorade for breakfast before getting dropped off at school. He even removed the cotton ball on his own, during recorder class. We are finished with blood work for now.

Wednesday, April 6, 2011

What's Next?

Wednesday is therapy day for Riley. He enjoys going and talking to someone who is neutral. I have no idea what he and his therapist talk about. I don't ask. It's not my business. The therapy is for him to feel better about himself. Wednesday is also an early release day for me. I was at school quite awhile, getting sub plans ready for tomorrow (I am out of the classroom on school business), and finding my desk. I still left early though. On my way home I came across Riley, almost all the way home from school. I drove him the rest of the way. When we got home he presented me with paperwork on a project he has to do for History. He has to do a report on Copernicus, an astronomer. After his appointment we stopped by the library to see if they had any books. Luckily for us, they had three total-two on shelves, so we snatched those up. He started reading them the minute we got into the car, telling me facts all the way home. This report should be a piece of cake as he's VERY interested. I just feel badly for any other students who may have been assigned the same scientist, because we have all of the books! Oh well, he'll use them, and then we'll get them back to the library.
Riley looks to be about two in this picture. I can't even remember where this was taken. Look at how serious he is about riding that horse.
LOOK at this one! So cute! Look how teeny Quinn was, and his face was just so round. Riley used to smile with teeth, in all of his pictures. We rarely see teeth in pictures now, unless we request.

Riley played baseball too, as Quinn does now. I think he played 5 seasons and then gave it up when the pressure (self imposed) became too much. The last season he played, his team won the championship. Riley never got one hit off the pitching machine that whole season. It was heartbreaking. He gets an idea in his head, and there's no changing his mind.

So where are we now? Hopefully things are stabilized at school for now. There's only 42 days left. We are awaiting report cards this week, I think. On the testing side, we mailed off our packet to the Regional Center of the East Bay. We decided to let them do the clinical testing for Riley, because I believe he can get in rather quickly. UCSF called again today, but we have to let that option go, because insurance will cover Stanford 100%, and decided it was silly to pay out of pocket. So we'll go to the Regional Center (apparently we can use their help down the line anyway, especially in terms of school issues). We are still keeping our Stanford appointment (remember it's a 9 month wait), and we'll use that as a second opinion. The plus about Stanford is they have a whole center devoted to research and methods to help Autism Spectrum kids. I am sure it will be worth the wait, but in the mean time, we can lean on the Regional Center for any support we may need, and we'll have some results quicker.

It feels good to know that we have things more under control now. We can move on with our lives. Riley will continue with his weekly therapy, but may take the summer off. He goes to his social group on Thursdays, at school. Kevin and I will keep checking his school agenda and monitoring his homework. He's already showing signs of better organization. Today, he started an assignment that's two parts, and due on Friday. He completed one part and decided to complete the other part tomorrow night. Works for me!

Think good Riley thoughts tomorrow. He has to visit the lab in the morning, for blood work for the endocrinologist. He's very nervous. Kevin is taking him in the morning. I'll stay here and get Quinn to school. I've advised Kevin to have Riley lie down when they take the blood, and to take along a juice pack for him for after (that's when he freaked last time). Hopefully he won't have to wait long. Kevin will take him to school afterward, and let's hope he's in good shape by time he gets to school.

Tuesday, April 5, 2011

The School System

Warning: Super long post

Riley had an appointment today with an endocrinologist. I took the day off work and picked him up early from school. He got to go to two classes today. We headed to the appointment. The doctor spent almost an hour with us, going over his height/weight charts, etc. She ordered some more blood work (much to Riley's dismay), but we didn't have to do it today. He needs blood drawn before 8 am for one of the tests, so he'll be visiting the lab before school, sometime this week. I think Kevin should take him this time so that he can partake of the "fun."

The doctor's concerns are that Riley seems to be gaining weight, but he's just not growing taller. His projected height is only 5'3" which is not very tall. Quinn has similar issues, and also sees an endocrinologist. There does not seem to be a hormone deficiency (in either boy), which is good. It appears that Riley is a perfect candidate for a study. There's a pill that he can take, once a day. It will freeze the growth plate, which down the road, could amount in a better height outcome. There are no side affects, so we are interested in seeing what the doctor running it has to say about it. It's the same doctor at Stanford that Quinn has been seeing, who is running the study. The doctor we saw today is a doctor at our medical clinic, as they now have a pediatric endocrinologist. They didn't when we needed one for Quinn at 4 years old. The good news about this is that if it works, down the road it could benefit Quinn. Part of being able to be a part of the study is that the kids have to be just starting puberty, so that excludes Quinn, but is perfect for Riley. We'll see what happens.

Instead of sending Riley back to school, I was selfish. I kept him with me. We went to Ikea and looked through all of the fake dwellings. We had lunch in the Ikea cafe too. It was a nice day, and Riley would tell you it was because he didn't have to go to the lab that made it especially good.

So school. Interesting school year. This year started out ok for Riley, but at the end of the first quarter, there were issues with PE and his honors Science class. The Science teacher has really high expectations, and I don't get a sense that she's particularly organized. There have been many instances where Riley (and the other students as well) have completed an assignment only to get to school and she says they all did it wrong, and everyone redoes it. This is maddening for neurologically intact kids, but for Riley, it's especially hard. He can't read her-he can't really read anybody, so it's hard to get a sense of exactly what it is she wants. He's struggled all year with it. It's an honors class, and I believe there is an assumption the kids know the information, and are not being taught-NOT what an honors program is about. But we plug on, supporting him and trying to get through. He is capable to do the work, but he needs written guidelines as to the expectations-something she does not provide (I asked).

PE is a complete disaster. Riley is not athletic. He hates to run. He has horrible self esteem. He doesn't understand why the other kids tease and get mad when they don't win. It's normal stuff, but Riley just does not get it. I sent the PE teacher two emails at the beginning of the school year, outlining that Riley was in therapy for self esteem issues, and was being evaluated for depression, anxiety, Autism, etc. In PE the kids have to "run a mile." It's the most annoying, aggravating thing ever. See when he ran the first time, that was his time. Every time he runs now, he has to come within something like a minute of that first time or it's a "fail" and 30% of his grade. He can't beat his time-apparently he ran too fast that first time. We have already prepared him that NEXT school year, he's to run slowly. Is that idiotic or what? I understand the need to run. Riley needs to run. He needs the exercise. I am not against him running. I am against the timing and grading of the running-for ALL of the students, not just mine.

So we got an SST meeting (which we got because I wrote a letter requesting they test my son). I knew they wouldn't want to test him. He does not need Special Ed. He's too smart for that. I wrote the letter because I knew they would have to respond, and I wanted a meeting. I wanted a 504 for Riley. They responded within two days. TWO days! Isn't that cool? I was very pleased. They were awesome about the whole thing. I had been in contact with the school counselor anyway. I had gone to school to meet with her way back in November, and I told her about our plans for having Riley evaluated. We had emailed several times back and forth. When I got the diagnosis from his therapist, I again contacted her. I wrote my letter requesting the testing and took it to school. She was super supportive, as was the psychologist, when I spoke with her. We got the SST meeting first, inviting the PE teacher because at that time PE seemed to be the biggest issue. In fact, last quarter Riley got a "cinch" notice for an F in PE. An F!! How does one get an F when they dress every day (he's never forgotten the PE clothes) and they participate every day, and they aren't giving any attitude? Oh, and also when the mile run is supposed to only count for 30% of the grade. What about the other 70%? It's funny, but we got the notice five days before the SST meeting we had scheduled with the psychologist, VP, counselor, and...the PE teacher. So I asked about the PE teacher about the F during the SST. How could I not? Apparently some grades were "missing" from the computer when the notices went out. I was not born yesterday. We'll see what the final grade is when report cards come out this week. The teacher was open and receptive at the meeting, and he took the paperwork I had for him, about Aspergers and PDD NOS. He seems like a nice man, just doesn't know what to make of Riley (he's not the first). I explained to him that Riley didn't understand the teasing, which is totally normal during PE when kids want to win, but Riley doesn't get that. At. All. He takes everything personally. I could see a lightbulb go on when I explained that sarcasm, joking, and playful teasing are lost on Riley-something he probably uses with the other students. I also explained to him how much we troubleshoot for him at home. Example: Riley has his PE clothes every Monday because if he ever forgot them, he would have a meltdown. He would not handle wearing the "loaner" clothes well at all, and then the PE teacher would have to deal with that. We have saved him that by making sure Riley is prepared. We continue to talk to Riley about the things kids say that, yes, are mean, but are just normal behavior for the age group. We try to give him the appropriate wording to be able to fight back. I'm thinking things are better. Riley hasn't complained about PE, and he has talked about encouraging things his teacher has said to him. We are glad, but again, we'll see what the grade looks like.

After the SST, the next step was the 504 meeting. Four of 6 teachers attended. The PE teacher did not need to come because we had already met with him. The music teacher was on paternity leave (we didn't need to meet with him anyway as Riley LOVES that recorder class, and there aren't any issues). In attendance, Science, Math, English and History teachers. We got a few surprises. The Math teacher (also an honors class) told us that Riley was failing Math because he doesn't turn in any homework, and that he never starts his homework in class and she gives them time every day-I see that as an issue BTW. WHAT? I pulled out the progress note (which had gone home the week before) and it said, "C." I pointed this out. All she could say was that she had concerns then. Um. A C is passing. It's not great, but it's passing. An F is failing.

When brainstorming accommodation ideas, both the Science teacher and Math teacher were quick to suggest pulling Riley from the honors classes, and they specifically meant theirs...right then. Their classes. It was Riley's English teacher (a man I LOVE) who spoke up and said they couldn't move him with so few days left in the school year. It annoyed me, because Riley has every right to be in those classes. He's smart enough, and if their methods of teaching were better, he could succeed. Nonetheless, Kevin and I agreed to pull Riley out of honors classes for next school year (he qualified for three for next year). I think the GATE/honors program is a complete joke in my district anyway, and having/not having honors classes won't keep my kid out of college. So the meeting continued. The History teacher (Love her too!) had very nice things to say about Riley, as did the English teacher. Those two teachers are working overtime to help Riley. I can tell that they truly care about him. In fact, Riley missed three days of school last week, and the History teacher sent home a detailed outline (outlines are good and they benefit ALL kids) of what he needed to make up and when she wanted each thing. So super helpful for Kevin and I, who could check it off and make sure it got done-and it did.

Accommodations: Well, he doesn't have that many. He gets to use some kind of word processing machine (with spelling/grammar disabled) for the district writing test (his handwriting is horrible-disgraphia). His teachers are to sign off on his agenda every day, making sure he has the homework written down correctly (the Science teacher won't hunt him down though-she told me). They are supposed to email or call if any issues arise. I am guessing all is OK as I have not heard anything. That's it. Those are the accommodations. We were hoping for an accommodation in PE, but we were told there was nothing we could do. Oh and every adult in that room felt that the way the kids were scored for the mile was not fair. I left the meeting feeling confused and let down. I went home and sent an email to the VP outlining my concerns, making it known that I was onto the Science and Math teacher's resolutions. I think he really cares about the students. He said they would add on an accommodation to the timing of Riley on the mile laps in PE. Oh, and Riley also gets to go, unofficially, to a social group at school, that meets on Thursdays, at his lunch time. They didn't have to do that, but they did.

So I guess my frustrations really just lie with a couple of teachers. I really feel the counselor and VP have done a great job, and have been very supportive. The counselor has bent over backwards to help. They were willing to add the PE accommodation-and they got him into the social group. I'm happy for the accommodations he does have. I just think there could be some other accommodations in place. I'm not trying to be a difficult parent, but I want my kid in classes with teachers who are going to appreciate his uniqueness, not punish him for it. I wish I felt that things were all dandy with the Math and Science teachers, but every day Riley goes to school, I feel nervous and anxious for him. Those two teachers do NOT want to do anything extra. Actually Kevin and I are doing the most work. Every day we check his agenda, looking at the assignments. We make sure he does each one. We correct. We edit. We check off that he's done it and then see that he puts it into the appropriate folder, and then spend the rest of the evening reminding him to turn it in. We have no idea why he does the work then doesn't turn it in. No idea.

I am very grateful for the support we HAVE gotten from the counselor, VP, History teacher, music teacher, and English teacher (he's the BEST-next to Riley's 5th grade teacher, he's the only other teacher who I feel truly likes my kid. I will forever be grateful to them). Once we get the clinical diagnosis, I am hoping Riley can get an IEP. I have realized that the public school system is really not cut out to handle kids with high functioning Autism. There's no training for teachers. My next step is to write a letter to my district's superintendent to ask that teachers have training. There are a lot of Autistic type kids in regular ed, who do not need special ed, so teachers really need to know how best to teach them. So far though for next year, he'll have all regular ed classes, and hopefully Beginning Band (did you know that in high school band counts for PE??? We are all over that one), and hopefully his English teacher again.

I am sorry these are such long posts. I want to make sure I get it all down.

Tomorrow: I'll tell you where we are right now.

Monday, April 4, 2011

About the Process

Here's my new magnet for my car. I like it above the PILOT letters. Makes me feel in control.
If you think it's easy to get a child tested for Autism, I am here to tell you it's not. I honestly have no idea how all these kids are walking around with a diagnosis. It's been the biggest pain in the ass. Insurance is a nightmare. The first thing I had to do was figure out where to take Riley for further testing. We had the diagnosis from Riley's therapist, but figured for school purposes, we would need a clinical psychologist diagnosis. So began the search.

The therapist gave me a few places. After a visit with Riley's pediatrician, I got a few more leads. I have called: The Children's Health Council, Lucile Packard Autism Center at Stanford, UCSF, and Kevin called the Regional Center of the East Bay. In addition, I tried to make an appointment with a developmental pediatrician through our health care provider, to see if she could do the testing. There is one. ONE developmental pediatrician. One. Of course, she is out on maternity and not taking any new patients. Of course.

I then called the Children's Health Council. I liked them. The man I spoke to was very nice, but they don't take our insurance and it would have been $5,000 out of pocket! So I called Lucile Packard. They set up a phone interview. I had to take a half day off of work to take the phone call. It was all of 5 minutes long-long enough to tell me I needed a referral from Riley's primary doctor in order for us to continue. I called about that referral twice. Called Stanford twice to ask if they got the referral and what the next step was. Nobody called back-from either office! I then took Riley IN to see his doctor-he needed a physical for Scout camp anyway. While there I asked about the referral. I left the appointment with a referral for Stanford, and also a need to take Riley to visit the lab for blood work and a bone age test (he's short, there's concern), and now we also have a referral for a visit with an endocrinologist (who we see tomorrow).

In the meantime, I gave Kevin the task of calling Stanford (my time is limited during business hours). He got through THE FIRST TIME. He set up a phone intake interview for a Wednesday morning. I didn't want to take any more time off so I rearranged my prep schedule with another teacher so that I could take the call. Kevin came over to my work and we waited. And waited. And waited. No call. The next day, while on a field trip with my students, they called. They wanted to know if I was available to talk? I told them I was YESTERDAY when it was scheduled. They apologized and said they would call at 4 that same day. Well, they didn't call at 4, or at all. Finally, Kevin reached someone on Friday and got the intake interview done. We are now "in line" at Lucile Packard-it's a NINE month wait. Perhaps they figure Riley will still be Autistic in 9 months, so no need to hurry. I actually think the issue is his age. If he was little, he'd get right in as early intervention is key. Oh how I wish someone would have believed me when Riley was little.

We still didn't know if our insurance would cover a visit to Stanford. We figured it would as that's where we take Quinn (to see HIS endocrinologist-he's also short, there's concern). Kevin needed to call. I had already called UCSF (Loved them too, so friendly and nice and they called back!) and got Riley on the list there-a shorter two to three month wait. Well they called last week and could get him in THIS MONTH! Only problem is our insurance won't cover that (but now we know that they WILL cover 100% of the Stanford Lucile Packard visit!) So we decided to wait out the 9 months at Stanford. They have an awesome Autism team of doctors and researchers.

Kevin and I then went (for FREE) to the Autism Symposium on Saturday, put on by Lucile Packard. I talked with a friend there and she encouraged us to go with the Regional Center, not to wait, that we would need their help eventually. So today we mailed off that packet. We will still keep our spot at Stanford and use it for a second opinion. We are certainly hoping that the Regional Center can get Riley in quickly, otherwise we may have to pay out of pocket so that we can speed up the process. Maddening. The whole process is maddening.


What's not maddening? Riley. This is from Halloween 2009. I love this picture.

Riley got scratched by the cat tonight. He kind of freaked. I think he's a lot more sensitive to things. Or perhaps he's nervous about his trip to the endocrinologist tomorrow-we have already prepared him that the doctor is going to want her own blood work done, which means a trip to the lab. We just visited the lab here, after his appointment with his regular doctor. It did not go well. He nearly passed out. I just stood there and cried. Luckily my mom was there to help. To say that things have been stressful around here is quite an understatement.

I've rattled on and on tonight, so tomorrow I'll tell you about the fun we are having at Riley's school.

Sunday, April 3, 2011

Little Riley

I found some pictures of Riley when he was little.
He's probably 3 in all three of these pictures. Our digital pictures started at this point. All of the really little shots of him are on film. Remember film???
See what a happy boy he was? So smiley, and so smart.

Awwww. Cute huh? It's strange to think back to those early days. He's our first kid. He was such a smart little guy, so lovable and kind-he still is.

To be considered truly Autistic, there tends to be a significant language delay in kids. Riley did not have a language delay at all. In fact, he started talking at 9 months. By 18 months, he knew all of the letters in the alphabet and could speak in full, complete sentences. He was a tiny thing, and the vocabulary would throw a lot of people. It's funny, but when Quinn was two, he wasn't saying much (compared to what Riley could say at that age), so I took him to the doctor thinking he was a dud. I was assured that Quinn was fine. We later found out that Quinn was farsighted and needed glasses. When he got the glasses, language came right along, but he was still no match for Riley's vocabulary.

Looking back at Riley's early years, there were signs of Autism even then: he lined up his cars when he played with them, he was obsessed with diggers (construction vehicles) and could name them all. He liked numbers. He watched the same shows over and over and over. He would go to bed EVERY night, listening to Perry Como's "Night Before Christmas," never even entertaining the thought of listening to something else. There was more too. He could sing entire songs, all the words, along with the song. He was kind and gentle and seemed to really understand things. He didn't like noisy places and scared easily. He was (and remains) very cautious. All of these things can be attributed to normal childhood, but then again, almost all can be signs of Autism.

When he started preschool, I could sense that he was different. He had trouble almost right away, with another boy who insisted on picking on him. Kevin and I would roll play with him to help him defend himself. It didn't work. This boy had Riley backed into a corner one day and Riley spit on him. I know he knew that he couldn't hit the kid, so he did what he could to get the kid away from him. The teacher was mortified. I told her that we would address the spitting, but that the boy needed to be stopped. He was bullying my child. They moved that boy to another room. That was Riley's first encounter with a bully. At that same time, he could clearly tell us the events at school, but he couldn't ever name the kids in his class. He didn't seem interested in playing with the other kids. We just figured he was shy.

In kindergarten he could name all of the states and their capitals. He continued to play alongside kids, but not really with them. I remember the kindergarten teacher telling me at conference time that she didn't really need to teach Riley, because he knew everything already.

Nothing about 1st grade stands out. He had a nice teacher who seemed to like him. He was quiet and would talk every once in awhile in class. He was smart. He still didn't really have friends. He had kids he would play around, but none that he really connected with. He played with our neighbor (who turned into a bully), but that didn't always go that well. The boy was quite bossy and Riley quite timid.

In 2nd grade he worried at length about global warming. He was timid. It was this year that the crying started. He would cry about everything. When it came time for him to lose teeth, it panicked him. His two front teeth were hanging by threads. He would not wiggle them. It was a boy named Thomas who did us a huge favor by knocking out Riley's front teeth-not on purpose, just being a bouncy 2nd grade boy.

3rd grade was very hard for Riley. He had a male teacher, and I think he was intimidated by him. I also think the teacher thought he could make a man out of Riley and get him to stop crying. It didn't work and his self esteem took a huge dive. There was nothing he could do to please this teacher. It bothered him.

Riley started becoming more withdrawn in 4th grade. I chalked it up to him being the victim of a bully who lives on our street, and who was in the same class. We took him to counseling at that point, as we were hoping to get some answers, and get him help with self esteem. The counselor said it was all me and sent us on our way after only three visits. I tried to change my approach with Riley, and it worked for awhile. We roll played how to deal with the bully.

5th grade was awesome! Best teacher ever! She was so patient with him and "got" him. She's the only one so far who has understood him. He had some more trouble with a bully, but it was taken care of by his awesome teacher. He would participate in class. He had a best friend this year, a boy who was a 6th grader. That boy moved away though. Luckily he's not far away, so we can arrange for them to see each other, and they have stayed in touch.

6th grade was ok. The teacher did a great job preparing them for Junior High. Riley would get into trouble for constantly reading his book in class. He thought nothing of whipping out his book and reading even if his teacher was in the middle of a lesson. He wrote a response to something for an assignment which alarmed us. His teacher made a copy and gave it to us. In the assignment he indicated that he had no friends, nobody liked him (including me) and that his brother got away with everything. It was very disturbing. It was then that we started thinking about having him evaluated. He was nervous all year about the other boys bullying him.

Currently, Riley doesn't make eye contact. He won't initiate a conversation unless it's about something that interests him, or to tell us something he needs us to know. He has a flat affect. He sometimes won't even answer someone when someone has said hello or asked a question. He doesn't call anyone by name-not even Kevin and I. He does not call us mom and dad. He starts everything with "uh" or he just starts talking, but he won't call us mom or dad. He can't read people's faces. He doesn't understand social cues. He can't tolerate teasing or joking. He doesn't understand sarcasm. He has gotten better in many of these areas, but there are still issues. On the other hand, he is very smart. He can find information about anything (he loves his computer) on the internet. He is sensitive and kind, and would never dream of treating another person (besides his brother) badly. He loves history. He likes science. He loves to read (although he tends to read the same books over and over). He doesn't lie. He's becoming a whiz at piano! He's a nice kid who happens to have Autism. As my mom says though, Autism does not have him. We will work hard to help him along-we have all along.

Over the years Riley has also gone through many obsessions: diggers, makes/models of cars, states and capitals, maps, flags, Titanic, Pirates of the Caribbean, Indiana Jones, fact books, and currently, Disney.

So this year, as a 7th grader, we finally took the steps to get him evaluated, and that's where we are now. Tomorrow I'll post about all the fun we've had getting testing figured out and the school system. Having a late diagnosis is very difficult. I would have done it sooner if anyone had believed me. I was constantly asking the pediatrician questions. Oh well, we know what we are dealing with now, and we can move forward.

Getting the News

This is Riley. He is newly 13-as of March 15! He has high functioning Autism.
If you are new to my situation, or if you haven't ever visited my other blog, Juliebeane, here's some background information. I am a mom and wife of 15 years to my husband, Kevin. My sons are 9 and 13 and I can't believe how old they have gotten! I am also a teacher. I've been teaching for 15 years. I currently teach 2nd grade, and have for 9 years. In February we finally got some answers to some of our concerns regarding our 13 year old (then 12) son, Riley. He has a diagnosis of PDD-NOS (Pervasive Development Disorder Not Otherwise Specified), from his therapist. This is a disorder on the Autism spectrum. We are seeking further testing from a clinical psychologist to see where exactly he falls on the spectrum, and to see what his strengths and weaknesses are. This will also help regarding school issues.


Let's flash back to February 8. That's the day I was home sick with my other son Quinn. Since I was home, I was able to make phone calls-something I have a hard time doing with my day job.
One call I needed to make that day was to Riley's therapist. He had had a significantly tough weekend celebrating his brother's birthday, and I wanted to run some of the events past his therapist. We had asked her to evaluate him, looking for signs of depression, anxiety, or an Autism disorder-something I had suspected for a really long time. She was just concluding her findings, and we already had a meeting scheduled to go over the results, after she consulted with a few people. In the course of our talking, she mentioned she thought he had many of the classic signs of Autism-rigidity, flat affect, lack of eye contact, etc. As you can imagine this was devastating news. I knew there was something "off " with him, had known it for a long time, had even suspected an Autism disorder, but hearing it confirmed, by a professional, threw me for a loop. Since then, it's been one adventure after another.