Monday, October 31, 2011

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).

Monday, October 17, 2011


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.

Monday, October 10, 2011

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.