Hmmm

Riley had his first performance with the band, last week. His music teacher is amazing. All of the bands are just spectacular! Riley can actually play the clarinet! He was pretty pleased with himself.

So after break we are going to possibly look into an advocate. Riley's 504 plan is not being followed. There are at least 4 accommodations which are not being implemented. One of which, and my biggest concern, is a social group. The psyche was going to look into starting one, but needed to get permission from some other parents. We've heard nothing about it since. We met for the 504 in October. I am tired of playing with these people. My kid needs some accommodations as this disorder is starting to affect his academics. The junior high seems unable to do this, so now we must go forward. I have plans, oh I have plans, and I don't think I will be very popular, but who cares? I have pretty thick skin, and this is my kid and this crappy school district is wrecking him.

Riley is starting a social group in January. There's a woman who works for our district, who runs social groups on the side. We will have to pay out of pocket for this, but he needs these skills. Oh, and I did get a phone call from my private Cigna Kelly (when you bitch about Cigna on Twitter, you get results), saying that our insurance will cover a social group (it's in Mountain View though), so I believe we will explore that option as well, and try both groups for awhile. The local one will be good, because perhaps we can connect with some local families who know what we deal with daily, and can relate.

Just Checking In

Things are going well in Riley's world. He's working on finishing his walking stick, in Scouts. This weekend they have an all day workshop to finish it up. He's done a nice job sanding it.

We had a little crisis at dinner last night. Riley didn't chew his bite of taco very well, and got some shell stuck in his throat. He was freaking out, saying, "I don't want to have to go to the emergency room!" Clearly he was talking, and NOT choking, so that wasn't going to happen. He wouldn't drink any water at first, to try and wash it down, just was hysterical. It finally went down, and he continued to have another taco, telling us he would take smaller bites. Good thinking. It's things like this that just bug me. His reactions are so over the top, and not how a "normal" 13 year old would react. It's very frustrating to try and talk sense into him as he is very hard to persuade. We went to dinner tonight, at a restaurant, and while I was up getting my burger fixings, he had taken his food to his seat. He comes up and says, "Well I can't eat my dinner because I don't have a fork!" I had him turn around and see the "Silverware" sign above. Of course they were out, so I made him track down an employee and ask them to refill it. He just doesn't have the knowledge to figure this stuff out on his own! Again, frustrating, but we plug on. I now see very clearly what we have to work on with him, so that he can function as an adult.

Social skills group and Alpha-smart have yet to come to fruition at school. I am cutting them some slack because of the break last week, but I am only going to wait so long, and then I have to call to get things rolling.

Riley goes back to see the endocrinologist this month-the day before our Disney World trip. I think the medicine he is taking, is causing him to gain weight. I want to see what the doctor says, and then in January, we are ALL starting a new, healthy eating regime. Is it wrong to put a 13 year old on a diet? I just think he would be a lot more active if he were in better shape. He WILL NOT stop eating though!

504 Meeting

So we had Riley's 504 meeting today. 3 of 6 teachers were present, plus the psychologist and the VP. A little funny about while we were waiting. The secretary was calling the VP on the walkie, to let him know we were there, and because they had a new student and wanted to know when she could start. They couldn't get him and couldn't get him, and then someone said he was at McDonald's across the street. With that, the secretary looks at us (because we can hear what's going on) and say's, "He's not eating, he's there for supervision." We knew that. There's a McDonald's right across the street from the junior high, and it's packed with kids after school. He was over there, probably chasing kids away, making sure all was ok. It was funny though.

Anyway, Riley still has the 504. The psychologist doesn't think he needs an IEP, especially because they can give him some of the things we want, with a 504. We got everything we asked for: an Alphasmart for Riley to use to take notes (writing is just tedious for him, and his printing is super messy), prompting from teachers for homework/assignments (he doesn't just do what the other kids do-he does his thing), extra time if he should forget to turn in work, prompting to use eye contact, and most importantly, he gets to join a social group. Now that will only be a go if the psychologist can get permission from the parents of some other kids who need that service. If they say no, then we will continue to push for a social group for him. I know there's someone available to run a social group, and has offered to even just take him and coach him.

We were happy when we left the meeting, although I do not know why the Math teacher did not attend the meeting, as she was in the office when we were waiting. Riley's English teacher thought it was tomorrow (we saw him after the meeting), and was very apologetic that he missed it. We were not concerned with him as he had Riley last year and is aware of the situation. He's such a nice man. The music teacher plays with the Oakland Symphony, and was out today. That's another one that is fine. Riley is doing well in that class. There are no issues. We could have used the Math teacher being present though, but we'll go tomorrow night, to conferences, and talk to her. We'll also meet separately with the PE teacher tomorrow night. She really wants to help him, and will make accommodations-she already has by having him run one lap instead of two for his mile run. She doubles the time for the one lap. She's going to help us brainstorm ways Riley can earn at least a B. She did inform us that he's been telling her he can't breathe even before he runs. We nipped that in the bud tonight. He breathes just fine. It's the running that brings on the asthma. I think he has anxiety about running and is using that to get out of it.

They are really being very accommodating at the school. We even talked a little about high school, and I know who to contact there, at the end of this year, to ensure that Riley has a smooth transition into high school.

Oh, and we picked Riley's report card up yesterday: 4 As, a C in PE and a D+ in Math-he has not been completing assignments in there. We will meet with her tomorrow to discuss that.

Double OH, I have this awesome paper about PDD NOS, so I copied the important pages about the disorder, and another one I have about Aspergers, and gave a copy to each teacher. The PDD NOS one was very good! LOTS of good information.

Preparation Time

This picture has nothing to do with today's post. I just can't post a post without a picture.

We are gearing up for Riley's 504 meeting on Wednesday. My friend, who is a therapist/behavioralist and two of her colleagues came over on Friday, to spend some time observing and working with Riley. The three of them are forming their own business, helping parents of kids on the spectrum. All three of them were shocked that Riley does not have an IEP, and they laughed at his 504 (it IS pathetic). I let them look over the testing results from Regional Center, and there was agreement that the diagnosis could still be Aspergers, but really it doesn't matter, because PDD-NOS is an Autism Spectrum Disorder. I think it only matters to me, because the school does not know what to do with the PDD-NOS diagnosis, and Aspergers is easier to understand. Anyway, they really helped me figure out my focus for Wednesday's meeting. I just sure wish I knew if he was going to get an IEP or not-the psychologist never got back to me about the testing results. It should be interesting to see if she shared the results with the VP or counselor. So I have a clear idea of what I want. All of my goals for Riley are social goals. He has to be able to introduce himself to others, and learn to carry on a conversation, a two sided conversation, not just answering questions. He's not good at chit-chat. He can and will answer questions, but he won't reciprocate conversation. If I ask him how his day is at school, he would never then ask about my day, etc. Another goal is to get him to use names. He does not address anyone by name, except for Quinn, and he says that name more than he really should. He does not call Kevin and I "mom" or "dad," and he is certainly NOT using the names of his teachers. He's going to HAVE to use names when he has a job some day. He won't use his teacher's name if he has a question, he'll just start talking. The ladies that were here Friday prompted him to come into the living room and say, "Mom, I decided I want burritos for lunch" (they made him choose what he wanted for lunch, threatening sushi if he didn't choose). He came into the room, walked over to me and said, "I decided I want burritos for lunch." He was then redirected and he said he couldn't do it, that he wasn't good at that. She then prompted him to say her name and that he was not comfortable saying that, which he DID do. There's been a handful of times that Riley has said, "mom," and each time I haven't answered at first because I am not used to him saying it.

I will keep you posted about Wednesday's big event-oh I am also asking for an OT evaluation and a social skills group, and for him to be able to use an Alpha Smart for note taking. Ducks in a row, ready to throw down if it comes to it. I am over my district and their lack of helping kids-and not just my kid either. ALL kids.

Riley's evaluation from Regional Center arrived this past weekend. It's a diagnosis for PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified). It is an Autism Spectrum disorder. When you can't be lumped into one category, but there are issues, this is where they put you. It doesn't really matter, because the people that completed the evaluation, obviously saw things that we have been seeing as well, and clearly there is an impairment which needs addressing. PDD-NOS is what his therapist said early on, as well. I still think that he's Aspergers, because of the obsessions. The observer said the only reason he doesn't qualify there is that you can carry on a conversation with someone with Aspergers, but Riley can't carry on a conversation. He can discuss things, and answer questions, and offer a few tidbits here and there, but there's no back and forth reciprocation. I think it's a really fine line. Again, Autism is Autism, and he can have accommodations for PDD-NOS as well as Aspergers or Autism or sensory disorders.

The evaluation itself is very interesting. It's very clearly written, and describes some of the things he was asked and asked to do, during the evaluation. It also includes the observation done at school. Two different people worked on the evaluation. The first was the intake person, who decides if testing continues or not. That's the one with the woman, and Riley spent the entire interview looking at a spot on the wall above her head. He did not make eye contact once with her. The second lady was who he met with in October. Kevin took him to the appointment. She conducted the actual testing, and the observation at school.

Some interesting aspects of the testing. Riley was asked to pick 5 objects out of a bag, and to tell a story about them. He was unable to do this, but was able to connect them together in some fashion. He was also given opportunities to engage in a reciprocal conversation, and he was unable to do it.

The school observation went ok. The observer saw him make some conversation with other students-only after they spoke to him first. In Science the kids were supposed to find a partner. Riley roamed around, not asking anyone. The teacher found him a partner. In PE he participated to the best of his ability. The observer spoke with two teachers. Both said he was quiet, and made little eye contact. He doesn't chat much with the other kids, but will raise his hand to participate in class. The observer thought he did pretty well at school, but did note a few issues. He doesn't stand out among his peers, and the kids do not avoid him (THANK goodness). The observer felt that he functioned pretty well. I really think opposite. She saw him on a decent day-on a day when he was maybe not as "clouded" as he can be. He will talk to others, but he doesn't initiate conversation with his peers. He will walk over to them and let them start talking to him.

The recommendations: This part is interesting to me because the school does not want to give Riley an IEP. They don't think he needs services, but the recommendation is for an IEP, with accommodations in some core subject areas, such as PE (YES!!). It also specifies a need for a social group (double YES). She included resources as well-many I already know of, but a few I didn't, and also, perhaps the most awesome of all, there's some help for Quinn! There's something called SibKids that I can sign him up for, and he can interact with other kids who have special needs brothers/sisters. I am excited for that, because Quinn gets very frustrated and he doesn't understand why Riley does/says what Riley does/says.

I think I know what I am going to ask for, when we meet for the 504 plan (or maybe the IEP, if that works out). I simply want compassion and understanding. I want the teachers to just verbally check in with Riley, make sure he's turned in his work that we have worked so hard to get him to complete. I want them to email/call me if they notice anything different, and that's basically all I think he needs. This year is a really good year, but the school has hand-picked most of Riley's teachers this year. I appreciate that a lot, but now I worry about high school. Will they hand-pick his teachers for him? By handpicking, I mean the administration selects the teachers they think will be accommodating to Riley-horrible sounding huh? Some teachers will go the extra mile, some won't. Do I make an appointment with the administrator before school starts-like near the end of this school year-to discuss Riley's situation. I am hoping that this school year will give Riley the confidence he needs to succeed in high school. He really does have a better grasp of the expectations this school year. Is it because he knows what he's doing now, or is it because he has helpful, awesome teachers this year? I am hoping it's a combination of both, and I certainly hope to find that sort of combination next school year. PE is still a constant struggle, and I may try to opt him out in high school. There can't possibly be a PE teacher there, as good as the one he has this year. I love her. I am sure he'll still get a C in PE. Whatever. I'm OK with that (sort of). I'm just happy that we have not received any progress notes for an F in PE so far-in fact, we've had NO negative progress notes this trimester, from ANY teacher!! He's actually running an A in both Science and History so far!

Anyway, I am going to try and focus on this year, and worry about high school later. Right now, things are good. His teachers are great. He's happy. All of that equals one happy mom (only a little worried about high school).

Finally!

Well, here we are, 8 months and 6 days from Riley's original diagnosis of PDD-NOS (from his therapist), and Riley was finally, officially tested! He was out of school for the day, to get it done. He's already made up the missed PE class too-he wrote a paper about the rules of tennis.

I pulled all of this stuff out of Riley's backpack. Tons of wadded up pieces of paper, and he had three books in there for his read time! We cleaned the whole thing out, and he chose ONE book for his read time.

We went to Riley's happy place over the weekend too! We drove down to Disneyland on Friday (after he got out of school), and we came home last night. I wish you all could see what a different person he is at Disneyland. It's truly amazing.

After the testing today, the lady who conducted it, gave Kevin a check sheet. The sheet had three areas for determining Autism, and in order to be diagnosed on the spectrum, a person has to have so many deficits under each of the three areas. Riley more than met that criteria, so we know he IS on the spectrum. We are now waiting to see exactly where he falls.

Annoying issue of the day: I got a phone call from the principal at the Jr. High (she is useless really). She was asking about the observation set up for tomorrow-that is part of the testing. This same woman from today, goes to school and observes Riley in action. HE of course knows who she is, and why she is there, but the kids do not. So I set it all up with the VP, counselor and psychologist. I left the principal off of the list, because I figured she didn't need to be involved-the VP is the one who handles the 504 plans. The only reason she was involved last year is when I threatened a child advocate, and there was scurrying going on.

Anyway, so she called me today, at school. She wanted more info on the observation because the woman had called her to make sure it was a go. She said she didn't know anything about an observation and she had nothing in writing. I said that I had emailed the VP, counselor and psychologist, and that I had not included her in the thread. She said SHE was the one that handled that (and I was to know this how???). Basically she needs permission from me for anyone to observe. I said I had sent an email to the other three. She then tells me that they don't know anything about it either. (lies lies lies) I, of course, save EVERYTHING and I have the email thread. In fact I have the original email I sent to the three stating when Riley would be tested and when the observation would be conducted. The VP responded that the observation would be no problem, and when would that be? (So AGAIN, I wrote him back stating when the observation would take place). THEN, last Friday I sent him another email, asking when we would meet for Riley's 504, and REMINDING him of Riley's testing and the observations (the teachers need 24 hours notice). He never responded to that email. I sent that to the principal as well.

Long story short (I know, too late), THAT woman rescheduled the observation for Thursday, and she sent out a message to all of the teachers. I tried to tell her that the VP had already done that. I know he did because at Back to School Night, his Math teacher told me she was aware of the observation. I think the principal is on some sort of control kick, and is probably mad that I left her out of the loop. I think you can all see WHY I left her out of the loop. Useless. So I guess Thursday is just as good as tomorrow (whatever). I had some snarky comment for her in my response about Thursday, and I almost added, "He'll be just as Autistic on Thursday as he will be on Tuesday," but I refrained. I try to only deal with the VP, who I like. He's a nice man, and I KNOW he did his job. Maybe she needs to feel needed? I NEED her to leave me and my kid alone.

So that's where we are right now. Hopefully a clinical diagnosis is very close. 8 months, 6 days.

Sort of an Update

The four of us went to the Renaissance Faire a couple of weekends ago. It was a lot of fun. We went to see this show, the Broon Show, a comedy, juggling kind of show. Riley got chosen to be a part of the show. I was nervous that he wouldn't want to do it, but he got up, and went onstage!

His job was to hold a bowling ball (and wear a silly hat), and then hand the bowling ball to Broon, so that he could juggle it along with a lit torch, and an apple that someone else from the audience was to throw to him.

He did a great job, and enjoyed himself too.

Things at school are going really well for Riley. He's on top of his work (well except for the English homework that he never took out of the printer from Wednesday), and nobody is bothering him. He has a PE teacher who is pretty freaking awesome! She is really trying to work with him. He now goes, every day, to the office to take two puffs from his inhaler (exercise induced asthma) before going to PE. He was having trouble remembering (tell us something we don't already know), but his PE teacher enlisted the help of his 1st period music teacher, to help remind him. He's still complaining that he can't breathe, and his teacher indicated there were good days and bad, but she's not giving up on him. I so totally appreciate that! I think we will have a meeting for his 504 plan, soon.

Riley's testing is on October 17, at the Regional Center. Lucile Packard called, and his name finally came up there! Only she called to say that our health insurance wouldn't pay. Kevin was told they would. I was bitching about it on Twitter and was contacted by someone at Cigna, and they are currently working on it. We really don't need them to do the testing any longer, but I want to be able to take him there, because of their research and knowledge on Autism. I need to call the Behavioral Benefits person at Cigna, tomorrow and see what they say. It pays to bitch, and it pays to do it in a public way.

So far, so good. Riley feels good about school and most importantly, himself. He is working hard, and we are so proud of him.