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.

Brain Freeze

Today, R.'s brain was frozen. At least, that's what he said as I was trying to get him into his day at school. I had read on another autism mom's blog (who knew there were more of us?) that sometimes these kids have a problem with white paper...it's too bright for them. So, I asked R's teacher if she could put his daily contract on colored paper rather than white. She happened to have a few copies run off on light green paper, so we used that today. Hard to tell if it was helpful or not, though, since R decided that he wasn't having anything to do with writing today...not even the date and his name.

Sigh. I left him working with his former Resource teacher (that's what they call Special Ed these days) who always had a great way of making him laugh and getting him to do things when no one else could last year. She is a miracle worker. Let's hope that she worked a miracle on R.'s frozen brain this morning.

Tuesday Sunshine

R. had a good morning...no hitting, choking others, or taking off his pants at school (yesterday's fun!)...bravo! The only wrinkle this AM was an announced fire drill. He started worrying about that the moment they announced it on the intercom first thing. I told him he had his headphones on and they would call his teacher on the intercom before the big buzz. I left with my fingers crossed. His teacher emailed me mid-morning to say that he was fine during the fire drill...no small feat. I'm really coming to love his new teacher; I think she gets it.

Oh, and R.'s new obsession (and I mean a literal obsession...he mentions it all the time) is the release of the new Lego Star Wars II video game on September 12. Their website even has a countdown clock until the big release...how nice of them to accomodate R. that way! He's taken to checking the clock online every morning and he worries that it really won't be released on Sept. 12 as they say. My mom is tapped to actually get the game for him...he asked her this weekend on the phone. She says she likes his directness. No subtleties with this kid, nosiree!

Monday

This morning, R. slammed into the door at school first thing. Then, he rolled up in a ball and rocked back and forth on the floor when he was supposed to be doing his work. I couldn't even get his headphones on him. Finally, as I tried to ignore what was going on, he started taking off his pants (to get my attention? because the waistband of his underwear was bothering him? I don't know). I was so angry at him...

But, I finally got him on track, got his headphones and "hug belt" on him, and got him in his seat. I left and told his teacher that at least he was being quiet and sitting in a chair. A small triumph.

Update: I went to check in on him at lunchtime. His teacher said that he had tried to take off his pants again, and I was reminded that we need to get him larger underwear (maybe that will help? He keeps complaining of "rashes," which I think are just the waistband bothering him). He had his headphones on and was reading a "Captain Underwear" book (do you see a theme emerging?) in his quiet place. He had settled down so much; I was proud of him.

His teacher was concerned that he wasn't doing any work and especially since she will start grading them soon. I told her that I wasn't concerned with grades; I would be happy just to have consistent good behavior from him. I think she thinks I'm a strange parent that way! She also asked me if I had thought about how he will deal with middle school...I couldn't tell her that I think about this all the time...way too much. Instead, I said that we take it one year at a time (one day at a time!), and we'll deal with that when it happens. She's really trying to help R., and I do appreciate it, but this is all new for her. R. and the new teacher are both on the learning curve.

As I left R. at recess (which he hates), he was contentedly reading his book with his headphones on...sitting on the stairs...doing the best he can do.

He can draw, so why can't he write?

This is the question that I got from R.'s principal today. Not in so many words, but it was there underneath the surface of our conversation about her watching him draw this intricate picture of cyborgs and transformers battling the humans. In the moment, I had no answer for her. She and I have a history (thankfully, most of the bad stuff happened long ago), so I always have my guard up around her. After I left her, I thought of possible reasons why...drawing is free from expectations to produce or communicate, while writing is all about that. I'm sure R.'s anxiety level rises just thinking about writing at this point. I worry that they will take away his adaptive computer (fancy word for "laptop") and make him write. He just got the computer this week and is doing well with it. Sigh. Sometimes I think I know how R. feels--people coming at you from all sides. Sometimes I want to scream, "We're doing the best we can!" Sometimes I want to hold him like a little baby and go back to the time before we knew about all of this.

Day 9

It's 1:30pm, and I have yet to get a call from R.'s school. This is a good thing! Days 6 and 8 were bad this week, but Day 7 was fine. Let's hope Day 9 will be the day that he keeps his hands, feet, and other objects to himself. I've got an hour and a half to go (3pm is when his school lets out). Fingers crossed....

Update: YAY! Day 9 was a good one. He wore his headphones all day and did his work AND kept his hands, feet, and other objects to himself. We're celebrating tonight!

3rd Grade

R. started 3rd grade last week...I know the drill, so I met with his classroom teacher, his new Resource teacher, his new Art teacher, and the principal beforehand. Since he has been at this school since kindergarten (mid-way through that year), they know him. So, it seemed like everyone was on board. But it is so difficult to explain R. to someone who has never met him...it is an experiential thing! How can I explain how wonderful and smart he is, but how he will go on sensory overload for no apparent (to us, at least) reason and start attacking his friends? (already happened once this week). Or how he will interpret a gesture from another kid as a life-threatening event and then grab that child around the neck to stop him? (also happened this week). His new teacher is also new to the school, so the good thing is that she had no preconceived notions of R. But I could see it in her eyes when we talked...that look of "what am I getting myself into with this kid?" It is always so difficult for me to balance talking about R.'s limitations with talking about his strengths. Since his is a "hidden" disability and he is verbal, everyone assumes that he is "normal." And I want him to be "normal"...or at least functioning as normal. But I also want him to get the help that he needs when he needs it. It is such a fine line to walk...wanting him to be independent, yet knowing that he needs help.

A good example: when I took R. to get his haircut the day before school, I told the stylist that he hated the sound/feel of the electric clipper on his skin and near his ears. She chided him, "You're a big boy...you can't be scared of this!" What should I have done? Told her, "he's not scared because he's not a big boy, he's scared because it sounds like a jackhammer in his ear, you stupid idiot!" That's what I wanted to say, but instead I reassured R. that I was right there, that the buzzing sound would not last long and I held his hand throughout. I didn't want to waste my time or hers by explaining SPD to her. These are decisions I make every day when dealing with R. and the world. Soon enough, he will have to make these decisions for himself.

A change in focus

Recently, I have decided to change the focus of this blog, and talk about one of the biggest issues that I face daily...being a mom to my eight year old son who has been diagnosed with Sensory Processing Disorder (SPD) and Pervasive Developmental Delay--Not Otherwise Specified (PDD-NOS). This change in focus was born out of desperation relating to a very commonplace event...the start of a new school year. While my older daughter looks forward to the first day of school each year with anticipation and excitement, it is something that my son, R., dreads. For him, it means having a new teacher, a new classroom, a new set of rituals, routines, and rules...all of these things upset him more than you can imagine. So, out of my own frustration to try and help him (and as a writer who deals with life's issues best by writing about them!), I decided to use my blog as a place to vent my feelings, share our successes, and connect with other families dealing with children on the autism spectrum. It will be a place for me to record the absolute joy and the weary challenges of being a parent to one of the most amazing kids ever. I look forward to sharing my journey with you.

It's....almost May?

One of my three readers actually posted to ask why I haven't posted since February. Ack! Is it really almost May?! Looking at the calendar, I find that it is too true.

What have I been up to? Let's see...working, taking care of the kiddos, thinking about planning a wedding next year, thinking about buying a house next year, writing, worrying about not exercising, launching a new grantwriting business on the side...you know, just your typical Diva Mommy activities! D. participated in this project at Vanderbilt with Judy Chicago, which opened on April 21. If you live in Music City, go see it! It's open until May 13. His project is entitled "100 Women." If you look closely, you'll see my name and my daughter's name on the wall he painted. It's a very cool piece, and he worked so hard on it. I'm very proud of him! The picture below is of Darling Daughter at the opening listening to Judy Chicago speak. She (DD) was tired and hungry, but held it together for the sake of art.


Oh, and Steely Dan goes on tour this summer...and they're coming to Music City...yessss! I'm so there. Finally downloaded "Morph the Cat," and I like it. Of course, as I said to a friend, it would take a whole lot to make me *not* like anything by DF--he'd have to put out a record full of screeching ala Yoko Ono for me to not like it (note to self: record? Yoko Ono? you're showing your age, Diva).

Tagged and Dangerous

Okay, I got tagged by yelhsacrow, so here goes:

The Rule of Four

Four jobs I've had:

1. Food Stamp Lady in Denton, TX
2. Picture ID taker at the University of Southern Mississippi (my first real job!)
3. Polymer Science grantwriter
4. 4th grade teacher

Four movies I can watch over and over:

1. Gone with the Wind
2. The Goodbye Girl
3. Bridget Jones' Diary (only the first one!)
4. The Adventures of Priscilla, Queen of the Desert

Four places I have lived:

1. McComb, MS
2. Denton, TX
3. Aberdeen, Scotland
4. Nashville, TN

Four TV shows I love to watch:

1. Survivor!
2. America's Next Top Model
3. The Weather Channel (is that a show? More like a state of mind!)
4. Sex and the City

Four places I have been on vacation:

1. Stavanger, Norway
2. Washington, D.C.
3. Disney World
4. Lake Tahoe, NV/CA

Four of my favorite dishes:

1. Beans and Three from Calypso Cafe (favorite sides: bean and corn salad, corn muffins, house salad)
2. Artichoke and Spinach Lasagna
3. Fried Green Tomatoes
4. My grandmother's peach cobbler

Websites I visit daily:

1. My Yahoo
2. Celebrity Baby Blog
3. Salon.com
4. New York Times.com

Four places I would rather be right now:

1. In a cozy B&B in Scotland
2. At home reading a great book
3. Skiing in Lake Tahoe
4. Dancing around my living room with my kids

I'm not going to tag anyone else, since I don't know more bloggers. So, let the tagging stop here!