R-ism: Umbrella language

Driving to school one day last week, R. is kicking an umbrella with his feet and it is making an annoying "whooshing" sound...

Me: R, please stop kicking the umbrella.
R: No, I like the sound.
Me (being playful): Are you speaking to the umbrella in its language?
R: Yes
Me: What is it telling you?
R: That it is an umbrella.

(Watch the "In My Language" video in the post below to get more context for this conversation)

New Autism links

• The Blame Game: Are School Problems the Kids' Fault? (from Wrightslaw, a great resource for parents looking for information on IEPs, state and federal laws, etc.)--a great article about school culture in terms of pinning almost 100% of children's educational problems on them and their parents, rather than looking at faulty teaching, faulty curriculum, etc.
  

• Article on new brain research regarding autism
  

• "In My Language Video"--a YouTube video made by a person living with autism to describe how she interacts with her world...make sure to watch it all the way through as the second half is her explanation of the first half. This is a facinating video!
  

New Year

An update on R.: he was suspended on his 2nd day back at school due to hitting his teacher. As I explained yet again to the principal how suspension to R. is like a reward (he gets to stay with mom! And doesn't have to go to school which he hates!), she basically admitted to me that the suspension was more about setting an example for the other kids than helping R. to deal with his problems. Anyway, I didn't fight it, so he was at work with me for one day, and he had in-school suspension for one day--both of which he enjoyed. I had him write an apology letter to his teacher, and had a long talk with her about some of the possible causes for the hitting incident. She was very gracious and she told me that she didn't want him suspended, but that it was the principal's decision. Whatever. At this point, I am just trying to keep R. off her radar screen and hope that we don't have any further incidents this year. When he got his most recent report card, he had brought all of his grades up (to A's and B's), so that was a definite plus. Also, after the suspension incident, I made an appointment to go see a new psychologist. We have seen Dr. J. 3 times now (once with just D. and me and twice with R. and me), and I think it is working for R. He really seems to like Dr. J., and looks forward to his visits with her. I hope she can give him some tools to deal with his aggressive and fearful feelings.

Sigh. Some good days, some not-so-good days. And so it goes...

Two Days in a Row??!!!

Hooray, hooray! Another good morning for R. today! We're 2 for 3 this week...

A Very Good Day

R. had a very good morning today...he went into the school building without his headphones and with minimum fuss (albeit with no jacket on and it's cold here today...brrr!), walked right into his classroom, put his homework in the basket, said hello to his teacher, and sat down at his desk and got to work. Hallelujah. An everyday occurance for some kids is a day of celebration for R.

Big IEP meeting on Friday and R's tonsillectomy on the following Monday. Keep your fingers crossed for all of us!

Principal Jekyll, Principal Hyde

Recently, the principal seems to have had an about-face regarding R. She has been sending me emails of apology (!) for not having a plan in place for dealing with substitutes (when R. has a sub in his regular class) and she sent me an email yesterday talking about how she thinks she and R. are bonding! Obviously, I am pleased with this turnaround...D. thinks that she finally listened to the tape of our last meeting, and decided that she needed to have a change of attitude. All I can say is that I am pleased and happy at the change, but remain cautious as I have been there before with this principal. Our IEP meeting is next Friday, so wish us all luck.

R.'s tonsillectomy has been scheduled for October 30 (the day before Halloween!). He is happy because he will get to miss an entire week of school. I am happy because this may finally help us out with his sleep apnea, bedwetting, and generally-waking-up-tired problems. It worked for his sister and I'm hoping it will work for him, too. Of course, I get to take off a week from work, also, but will spend most of the time making sure R. is comfortable and has a ready supply of popsicles, jello, and ice cream!

Update

Life has been so busy that I haven't been able to write a proper post about our meeting last Friday. Needless to say, it was both good and bad (the good: the experts were all there and shared their observations and recommendations for R.; the bad: the principal's attitude). But, now, a week later, I have hope that our official IEP meeting later this month will produce some good results. The classroom teacher and resource teacher are already implementing some changes and I think we are on the way towards getting R what he needs in order to be successful in the classroom. It's such a frustrating and overwhelming process at times, but I know that all of this will be worth it in the end.

Going away for the weekend to our church retreat...looking forward to some R&R!

R-ism

Today: phone call from school (of course, I'm freaking out as soon as I see the prefix on the caller ID, hoping that R. is not in trouble)

School secretary: Hi, this is R's school. R has had a small accident in the bathroom and is a little wet. The principal said that it was nothing much, but R wants a change of clothes.

Me: Is he there? Put him on the phone.

R: Hi, mommy.

Me: Are you just a little wet? Can you make it through the day?

R: No, I have pee on my underwear AND my pants.

Me: Well, it sounds like just a little...it's like water and it will dry.

R: It's not like water! You can't drink it!

Me: (big sigh)

I finally convinced him that he could make it through the day and didn't need to change his clothes. Note to self: make sure he has an extra change of clothes in his backpack tomorrow!

Better days?

I received a call (FINALLY!) from the autism teacher for the school district on Friday. She was amazingly helpful and seemed to be the missing puzzle piece I'd been looking for in all of this. We are meeting with her, the classroom teacher, and the resource teacher on Friday, and I am hopeful that we will get everyone on the same page about what R. needs in order to have a successful year. We are meeting with the classroom teacher today to go over where he currently stands in terms of his academics, behavior, etc., in advance of Friday's meeting. Wish us luck!

We spent the weekend in my home state visiting my 90 year old grandfather for his birthday celebration (his birthday was last week). R. behaved incredibly well at the nursing home...he was very patient and even gave his great-grandfather a hug before we left. We had a funny moment, though...since my grandfather's short-term memory is not good, when I asked him what he'd had for breakfast that day, he said he hadn't had any (even though he had). Well, R. heard this and at the end of our visit, he didn't want to leave until "someone had given Papaw his breakfast!" It was really cute...

Frustration

Lots has happened over the past few days, but I've been too tired and frustrated to post about it. The short version is that it feels like no one is on the same page at R's school and everyone is confused about how to proceed. I have submitted a request for an IEP meeting, which should happen before October 13. I keep coming back to the same question: why is it so difficult to get R what he needs to succeed academically, behaviorally and socially? I see this wonderful, amazing, smart kid--and, yes, he's challenging at times--but, is it so hard for other people to see all the potential in him? It is so draining to have to fight this battle year after year after year.

I'm tired and need whatever positive thoughts, prayers, etc. you have to offer.

Worn out mama

Today, when I took R. to school, guess what...another substitute. This one had never seen R., had no notes from the teacher about R., nothing. I was not about to leave R. in the classroom with someone who didn't know anything about how to deal with him, so I went down to the office and found the school counselor. In the middle of our conversation, the school OT called me on my cell phone, and I went out in the hallway to take her call. It turns out that she wasn't exactly happy with the way the autism specialist was handling R's case, and she (the school OT) advised me to call an IEP meeting ASAP and get everyone there (of course, I was already on my way to do that, but had been waiting for the autism specialist's report). The school OT voiced her worry that we were losing R. academically, and that we needed to figure out what he needed in order to have success in this realm. Of course, I mentioned that what he needs is a one-on-one aide. She stated (yet again...I've heard this from so many people now) that they are moving away from the one-on-one aide model. The next time someone says that, my response will be, "Then, what are you moving toward?" I have still not had that question answered.

Anyway, by the time I had gotten off the phone with her, someone from the office had told me that R. was going to be with his old Resource teacher today (this is someone who R. loves...she is fabulous with him and I'm so sad that she's no longer his teacher...she is assigned K-2 only). I went up to her room to check on R. before I left and found him with the biggest smile on his face helping her out with a group of kindergarteners. Oh, and she said he'd already finished his math work for the day. Bravo

A little sunshine

It's Wednesday and we've received no phone calls from the school in so long...I've stopped cringing every time my cellphone rings. So, the good news is that R. seems to have settled into the routine of school, and is not acting out aggressively these days.

When my mom was visiting last week, she decided to visit R.'s school on Friday and observe what goes on during his day (she also got to help put together some cool science kits that they are using this week!). Her observations were that R. is wearing his headphones almost all day and while he is behaving well, he is not connecting with the other kids and is not participating in the classroom activities like he should be. I told her that this was probably because we were trying to deal first with the more pressing issue of getting him to stop acting out aggressively...that was my primary concern at the beginning of school. But now that we've reached that goal, my next concern is his academics and social skills.

The good news is that, unbeknownst to me, the school OT had contacted the head of Autism Services for the public school system (I didn't even know that this person existed!) and she has come to observe R. this week. She asked lots of questions about his IEP, and I think she is going to be a great resource in getting R. the services that he needs. The teacher seemed very optimistic about this and said that they may be calling an IEP meeting soon to discuss this person's findings/recommendations. Yahoo! It is always amazing to me when the system works correctly...

So, hooray for the school OT, hooray for R's classroom teacher for hanging in there with him, and hooray for R. for doing the best he can every day.

Good week

It's....Thursday? It's been a busy week for me at work, so I haven't posted all week, but no news is good news, as they say, and R. has had a fairly good week. His video game (Lego Star Wars 2: The Original Trilogy) came out on Tuesday, and that's all he's been talking about. The good thing is that this gives us a powerful reinforcer for him ("when you finish your homework, then you can play Lego Star Wars"). We finally had to tell him to quit talking about it yesterday...there's only so much you can hear about one topic before it drives you insane!

And I met with the behavioral consultant on Wednesday. She is amazing...gave us all sorts of good information about how best to deal with school. Most importantly, she talked about helping him to develop social skills and how it is important to teach him to deal with breaks in his routine, unexpected changes, etc. I realized how much we just work around R's obsessions and habits, but that he will have to deal with people who don't do that out in the "real world" one day. She gave me so much hope and support in what we are trying to do with R. I'm looking forward to working with her.

My mom is coming to visit today, so we plan to have a fun weekend with Nana. Good days all around this week...perhaps the sun is finally breaking through the clouds!

Substitute

(Reading that blog post title reminds me of the Who song...)

Monday morning, we walk into R's class full of enthusiasm for a new week (that was me, at least), and we're confronted with a substitute. R starts freaking out, and I try to calm him down. The sub introduced himself and said that he had subbed for R's class before, and he knew all about him. He seemed very sure of himself, so I left R in capable hands (I hope). The good news is that it is after 3:00 p.m. and I had no phone call today, so that usually means nothing awful happened.

R. and Z. seemed to enjoy Macbeth this weekend...it was a very interesting production with lots of Asian influences. Of course, I had explained beforehand to R. that Macbeth was set in Scotland (he knows he has Scottish ancestors; I was attempting to make it relevant to him), so he was very confused. He kept asking, "How could it be Scottish and Japanese at the same time?" So, Z. helped me to explain that it was like when SpongeBob goes back in time on some episode of that cartoon. This seemed to work for R.

My mom comes to visit this week and she has plans to visit R's classroom. Also, we meet with the behavioral consultant tomorrow. More on this later.

Friday at last!

So, R. got all of his eight stickers yesterday (a first!), but it turns out that, at the very end of the day, he kneed his good friend in the groin. The friend was trying to help R. and touched one of his tools (a "squishy ball"). R. interpreted this wrongly as his friend trying to take away his squishy ball, thus the aggression. The result is that this little boy no longer wants to be R.'s friend. R. seemed sad about it this morning, but it is a natural consequence of his action. It's important for him to understand this as he figures out better ways to communicate to people around him. And, hopefully, his friend will be able to forgive him somewhere down the road.

No phone calls from school today...that's one whole week with no phone calls for those of you who are counting! We have plans to go see Shakespeare in the Park this weekend--it's Macbeth, which I hope will hold R. and his sister, Z.'s attention. Here's to the weekend and no homework--yahoo!

:-)

Over the hump

It's Thursday, and R. has had a great week. I hope I'm not jinxing anything by saying that before Friday afternoon.

His teacher wanted to try something new today...instead of him coming in and going directly to his "quiet space," she wanted him to go to his desk and start his morning work. If he did this, she said that she would give him 20 minutes on the class computer. Well, he balked a bit at first, and I thought he wouldn't be able to get it together at all. But, I made him put on his headphones, put his "hug belt" on him and his weighted lap pad, and he did it! He was worried about the regrouping in math (he hates it when he has to regroup in addition or subtraction...it messes up his sense of order!), but I helped him through the first few problems. He seemed to be able to do it in his head (he doesn't like writing the extra numbers at the top of the problem). So many things that make no sense to rest of us, but make perfect sense to him.

The bottom line is that he got over the hump. I left him happily working on the class computer. Fingers crossed for no phone calls from school!

Breathe

Sometimes, I think, "really, he's going to be okay. He's closer to 'normal' than so many others like him." Sometimes, as I watch him roll on the floor at school and refuse to do his work, I worry. Then, I take a step back. And realize that parenting is parenting, regardless of the challenges your child brings to you.

Just don't forget to breathe.

Little Fishy

Had to get to an early meeting this morning, so I left R. in his "quiet corner" in his classroom today. Typically, I try to get him started on his work (or at least get him to sign his contract), but not this morning. No phone calls yet from school (it's almost 11 a.m.), so my fingers are crossed.

Not much news to report; we had a very relaxing Labor Day holiday. We did go swimming at the Y, and R. loved it! He even played with a little boy there who he knew from his after-care place. I'm thinking that swim team could be his thing...it's not a true team sport and the only rule is to stay in the lanes and stay afloat. I don't know how he would do with being timed, though. For now, it's just a great fun skill that he has learned and I'm so proud of him for being brave enough to jump in the deep end.

R-ism

Yesterday in the car:

R: Mom, if there was a grade of "G," what would it stand for?
Me: Umm...well, it would have to be less than an "F," I guess. And an "F" is already a failure.
R: Then "G" would stand for "Gigantic Failure!"

:-)

Mama Tiger

I couldn't even blog yesterday afternoon, I was so upset.

When I went to pick up R. from school early yesterday (to go to the dentist where he behaved AMAZINGLY well!), I found him in the principal's office wearing his headphones and typing text from a book into his adaptive computer. The principal then accosted me about why R. was refusing to do his work in the classroom and said, "well, if he refuses to do his work, then why is he here?" I'm looking at him contentedly typing into his computer on her floor and thinking, "if he's so utterly defiant, then why is he doing his work so happily right now?" Anyway, things went downhill after that. She kept pushing me to explain exactly what R. could and could not do and why, I kept telling her to read his file to get those answers and that I had to take him to his dentist appointment and why don't we schedule a meeting to talk about these things? I felt completely ambushed. She acted like this was just the last straw, when I had been so happy earlier that his behavior had evened out and he was not hitting, etc. any other kids this week.

The good news is that through my frustration yesterday, I did what I do best which is to call everyone I can think of...which led to me talking to a behavioral consultant today at our local Children's Hospital who deals with kids on the spectrum. D. and I are meeting with her in a few weeks, and she has already promised to serve as support for his classroom teacher and resource teacher. Plus, she already has some good ideas to keep him on task in the classroom.

Also, his teacher emailed me this morning to say that he was doing so much better today, and that they had figured out that he could dictate his writing to her (or another kid) and then have R. type their writing into his computer. How creative! And a much better solution than rushing to judgement and questioning the child's placement in a public school. Mama Tiger was out in full force today and yesterday...you don't want to mess with her!

**shout out to my friend, Sheri, for the Mama Tiger reference.