Monday, August 24, 2009

Sensory overload?

And I'm not talking about Jaymes. Well actually, in a way I am. This week is a crazy week for me. I've spent the summer trying to make this week less crazy, and obviously you can see all the good -that- endeavor did me. I start college today. I am terrified. I wish I'd gotten all online classes. Anyone who has read the blog for long knows that I am much better in writing than I am in person. I get so anxious over everything that I just can't function properly. Already today I've found several things to panic about. Because i'm something of a masochist (and I love lists) I'll list them:

  1. I don't have a parking pass. I don't know if you can pay for one with the Pell grant money like I can with my books for school. I don't have $15 until wednesday, so I hope it can be charged to the Pell grant money or.. I don't know.
  2. I don't have any of my books. I was told not to get them till the first week of school, but I get the sinking suspicion that when I get to class this evening, I'll be the only one without a book.
  3. I don't know where the bookstore is
  4. I don't know how you find the right book (I know, this sounds ridiculous)
  5. I don't know where the room is
  6. What if I get there too early?
  7. What if I get there too late?
  8. What if I go into the wrong room?
  9. What if I can't find parking?
  10. I don't know how to cite references (this one is aimed at what I read in the online classes course info). I suspect I will learn, or fail.

All school related issues aside, I'm still dealing with Jaymes' school. As you may or may not remember, Jaymes attended an inclusive Pre-K class at this school for the last 2 years. Now that he is going into Kindergarten, he has been placed in a self contained "AU" classroom with NO inclusion. At best I think they may eat lunch in the same room as the other kids, and do recess together.

Obviously, this is unacceptable. Jaymes does very well at school, and learns more from his typically developing peers than he does from his teachers. He copies behavior he sees around him. He gets so much out of watching his classmates model correct/appropriate behavior and communicating. Stuffing him into a separate class takes this away, and it will take away some of the immense progress we have made.

I have been trying to get an IEP meeting set up all summer. Finally got in touch with the vice principal, who said he was setting it up.. And yet I've heard nothing. I'll be calling again today. I didn't want Jaymes starting without an acceptable placement and IEP in place.

Another issue is this.. Jaymes speech therapist at school attended a training for how to use his Vantage Lite. We all came away from that 6 hours with a BASIC understanding of the thing. Enough to implement it at least. Except they assigned Jaymes a new therapist this year, after 2 years with the same one. normally, I'd be annoyed but understanding. this time I'm annoyed. This new therapist has no clue how to use the device! She also didn't seem to understand that we're talking about using a device that costs more than my CAR did. it's not a little toy, this is a big deal, and it's easy to mess the thing up. I can't afford to replace it if it's ruined.

And the biggest current issue... They changed Jaymes' bus stop. They now have him a full 10 min walk away (hello, seriously injured hip, can't walk that far carrying a 2 year old and walking Jaymes!). The stop is at the top of the hill, on a very busy road with a 60 MPH speed limit. People go much faster. No sidewalk, nor even a shoulder to the road. Also, a house on the other side of the road with a very nasty, very large dog. So no, Jaymes cannot get on there. He needs his old stop. He may miss the first few days of school if they can't figure this one out.

So, long story short, I'm very frustrated, stressed, and anxious over everything. And jaymes is shredding paper all over the house, which my husband will freak out at me for if he sees it like this.

Off I go to clean!

Wednesday, August 19, 2009

We're all connected

This is a neat little story I thought I would share, because it really touched me and gave me some serious warm fuzzies.

My cell phone has been acting up, and being a real pain in the rear, so tonight I called AT&T to have it replaced under warranty. The customer service agent I was directed to was incredibly sweet and helpful, and the phone will be replaced no problem. At the end of the call she was confirming my email and mailing addresses. When I got to the part of my email address that reads "at dont bite the dog dot net", the agent laughed and said she'd never heard one like that before. I love talking about the website (yes, I really am still working on it, life gets in the way but that site is something that I'll always be adding to), so I told her that it was an autism resource site I maintain as a gift back to my fellow autism parents. She was amazed, and explained to me that her grandbaby was just about to go for diagnosis for an ASD. We talked a little bit, and i swear we both were goosebumpy and feeling those warm fuzzies.

We're all connected, this autism in our lives brings together people in two different states who have never met, through a simple phone call to get a new phone.

I think that is incredibly cool. I bet you do too.

Monday, August 17, 2009

Crazy summer, crazier start to the school year too, knowing our luck!

We were lucky to have Jaymes at ESY (Extended School Year) for a month this summer. Without it, I think that someone (someone we all know and ado---er, read) might have gone insane. The ESY session cut the summer into 3 chewable bites, rather than one long stretch. Bite #1 was great! We had a ton of fun playing in the kiddy pool, coloring, and playing outside. Bite #2 was great. Jaymes enjoyed ESY, had a really great teacher, and made a lot of progress on his IEP goals. And that leaves us here, in the last stretch of bite #3.

Let's talk about bite #3 for a moment. It's that part of the summer where it's incredibly hot. Too hot to go outside unless it's for water play. However, bite #3 is also that part of summer where the $15 kiddie pool out back has done one of three things:

  • Turned neon green, slightly squishy to the touch if anyone is brave enough to touch it, and incubating copious numbers of mosquito larvae.
  • Gotten a hole in it as a result of 2 very energetic autistic boys and their equally energetic "typical" toddler counterparts and slowly emptying like a hemmoraging old friend in the back yard, only to eventually end up flat and sad, growing green algae in the couple of murky brown puddles left in there. Also, please include the above mentioned copious amount of mosquito larvae
  • Be thrown away, in a fit of rage one day when a CERTAIN little boy with autism dropped mommy's horse's beautiful WHITE fly sheet into the green murky depths, and never replaced.
In our case, all three possibilities mentioned happened. The pool turned foul and green, slowly emptied from a hole made my Jaymes and Sierra and their two little pals who come over quite a bit. Even as it emptied, the little puddles remained, and got more disgusting each day. Finally, Jaymes snatched the fly sheet I have for Lucy (a gift, and one of my more prized possessions, horse-wise) and dunked it into the green hell. Luckily for all involved, it did not stain and no children were killed. The pool, however, was squashed into a green, moldy heap and shoved into the garbage can, never to be seen again.

Sadly, my husband did not see fit to replace it with a nice, clean, non-holey (not to be confused with holy, because believe me, that green mess was anything BUT holy) pool, and told me to spray the kids with the hose instead. As a result, we have no pool, thus very little outdoor play time, because it is TOO hot. The kids dislike sprinklers, and whole spraying them with the hose would be thoroughly therapeutic for me, they would not be thrilled with that decision.

Anyway, as we enter the last week of summer, I have run out of activities, energy, and supplies. The crayons are eaten or broken, the paper shredded. The scissors are doing good, and Jaymes loves to cut, so we could do that. The bean box (dried beans) I tried to make for Jaymes was long ago scattered all over my back yard, the only remaining evidence being the large bean plants growing all over that backyard. Maybe he's trying to grow a giant beanstalk to escape the boredom of life down here on earth. I'm sure the whole fairytale realm in the sky thing is more interesting than we are.

I've been trying to prepare for Jaymes next IEP meeting, which is in the process of being organized by the school's brand new, and very pleasant vice principal. I fully expect this meeting to be as unpleasant as the last one, and am in no way looking forward to it. I had thought it would be ok, because the person I've been talking to from ECAC said she'd come, but unfortunately can only come via phone. That will be VERY helpful, but I'd feel better with someone sitting next to me who can clearly SEE the panic on my face as I flail around in this meeting like a dying fish on the sand, and possibly come to my aid. (Hmm, lots of weird analogies today. I must be channeling my inner weirdo again. Don't mind me.)

Jaymes school starts in a week, as does mine. Did I mention I'm finally going to college? I'm not excited there either, 2 of my classes are in person and 2 are online. I had hoped for all online, I am absolutely terrified of going into those classrooms. Not to mention I have 20 mins to do a 25 min drive between campuses for 2 of my classes. Ack.

So, in a nutshell, this is where we are. More tomorrow about jaymes, who has become a very energetic, very stimmy, very grumpy little creature.

Sunday, August 9, 2009

Five years of obsessive, aggravating, loveable, cuteness

Jaymes has always been just a bit OCD. Over the years, the objects of his obsessive behaviors have changed. Some come back, some disappear entirely, and some are always an issue. It's funny how a simple household item can really make you want to duct tape your child to to the ceiling fan! Here's a look at past and present obsessions, because I really couldn't think of a topic to blog about today.

Umbrellas: The bane of my existance. I would rather be soaked to the bone than get out an umbrella around Jaymes. He LOVES them. He enjoys stabbing people (unintentionally) with the pokey parts, he enjoys breaking them, opening them repeatedly in small spaces, and does not feel that anyone else touching any unbrella within 100 feet of him is acceptable at all. At home we're good, we don't have any umbrellas. I just get wet if it rains. But when we're out, on a rainy day...

Doctors office or therapy appoinment waiting rooms are the worst on rainy days. EVERYONE has an umbrella, and usually the kids have their own little ones. They're all lying out in plain sight, where Jaymes has only to lunge and grab, then scuttle away gleefully coveting his new treasure. Mommy has to incite a screaming fit, prying the umbrella out of the little man's arms and returning it to it's owner.

And of course the owner always says "oh, it's ok! I don't mind! He can play with it!" and makes me feel like a mean mama for taking the umbrella away. It's great they don't mind now, but chances are they will mind when he rips the umbrella apart, or maims them or their kids with the pointed metal pieces. I hate umbrellas.

Silverware: A current, stress inducing obsession. Jaymes LOVES to take all the silverware out, dump it into the filthy dog dish, and carry it around the house. If he's feeling festive, he'll line it up all around the table. Every time he does this, a certain dish-washing-hating mom has to scrub the silverware clean all over again.

Ropes/chains/strings: Anything that can be wrapped, tied, knotted, strung up, or tangled is fair game. This one is an on and off thing- if none of his more preferred fixations are available. He loves to take whatever stringable object and wrap it around whatever trees/play house/trampoline/other child/mommy/dog might be nearby. He will then survey his handiwork with a look of great pride.

Chairs: Current issue in doctor and therapy waiting rooms. Every pediatric office has a little kid size table and chair set, and Jaymes HAS to stack the chairs, or put them on top of the adult chairs. The therapists or doctors look at me like I'm a horrible parent if I ignore it, but to touch one of his precious chairs is to start a screaming, flailing, angry outburst that causes even seasoned special needs moms to twitch. It's exhausting!

Other people's food: He's much better about this now, but in the past it has been a major issue. He still has his moments, but not like he used to do. In the past, no one's food was safe. He'd steal food off a strangers plate so fast it would be gone before I knew he had done it. He'd pitch a fit if someone was eating around him, and demand their food.

He still has trouble with people eating around him, but he doesn't rush up to steal from them. That's a relief. I can't blame him for wanting to eat what other people have, and if all he does is ask me for it, I can live with that.

Anyway, I've run out of energy, so I'm off to take a nap while the kids are unconscious. Got some really cool videos to post of Jaymes doing things the school claims he can't do- cutting out a circle, perfectly, on the lines! and other things. Prepare to be amazed. Sort of. Well, I am.

Anyway, that's all for now.

Thursday, August 6, 2009

Jaymes is a Techie

The boy LOVES electronics. Particularly his Vantage Lite. He understands the basics so well, and he learns how to say new things after just a time or two. It's amazing to watch. He still needs prompting some of the time to remind him to stay on task and not just punch random buttons, but it's impressive. Have some video! The finger in the pic is Jaymes, not mine, and his hand is not being guided. It's all him, with a couple of reminders from me. Be amazed. I am. And please disregard my exceptionally stupid sounding voice ( :

And one from yesterday, asking for... I forget what. Sorry for the poor video quality. Sony Ericsson Walkman phones have cruddy video quality apparently.

I'm working on customizing it for Jaymes, went to an awesome all day training thing on Tuesday to learn how to do things with it, and it was really, really helpful.

Monday, August 3, 2009

Fork you! Revisited, and some cool summer school updates!

In general, I'm not really bugged by a lot of Jaymes more obsessive behaviors. As long as daddy isn't home, it's fine by me that things aren't perfect. The filling bags with toys and lugging them around... I'm fine with it. Filling boxes with stuff and stacking them, no biggie. Filling a trash bag with blankets, whatever floats his boat.

But really, this fork thing is getting ridiculous. He spends all day long taking forks, lining them up on the table, or taking the entire silverware holder and dumping everything into the dog bowl. It's constant, it's incredibly messy, and it's time consuming for me. Every time he does it, I then have to wash all the silverware again, put it all away in each little compartment (spoons, forks, etc). Not to mention taking a single fork away (god forbid you take all of them away) starts a thunderous bellowing of "I WANT FORK" followed by hysterical screaming. Fun fun.

Similarly annoying is the crayon obsession. Every crayon, marker, or pen in the house goes into the dog bowl to be carried around until mommy isn't looking, at which point decoration of the house using said coloring implements will ensue. Shoot me now, he colored on the wall with ink and you know how Jason is about that. It is exhausting to live in the same house as a Jaymes and an OCD neat freak. Seriously.

Whining aside, Jaymes has been doing pretty well. His speech has been at an all time high, his comprehension as well, and his behavior is pretty above average. He's been hyper and wild, but I can live with that if all the other things are good.

Summer school ended Friday, and Jaymes received a GLOWING report from his teacher. Apparently Jaymes made significant progress toward his IEP goals, something the regular school (incidentally the same folks who told me summer school was just daycare pretty much) has been unable to accomplish. According to his summer school teacher...

"Jaymes has progressed toward his IEP goals. He is able to identify his name across settings, as well as read the days of the week. He is expressing his wants and needs using "I want...". Jaymes can expressively identify all of his peers, teachers, and some of the ESY staff using complete sentences and proper pronouns. (Ex. "his name is..."). He is counting with some verbal prompts. it is sometimes difficult to hear him speak because his voice is low. It was a pleasure having Jaymes in class."

May I just say that is was a pleasure having a teacher write these things on a progress report for Jaymes? Thank you, Mrs. Ehrens, you were an excellent teacher and any students of yours will be the better for it. Jaymes has accomplished so much in that one month of summer school. He NEVER say "her name is Sierra, his name is daddy" before. He did it the other day and I was blown away- it was incredible. Jaymes have a great memory for names, and he loves to tell me who people are. I love to contrast in this IEP progress report compared to the last one that said something along the lines of "Jaymes has no functional communication system" blah blah blah BS. I am so so proud of my little man and everything he's accomplished in that one short month of summer school. Good for him, good for his teacher, good for us too.

I've been trying to start tying up loose ends before school starts on the 25th. We need to have another IEP meeting, because I'm still not cool with shutting my kid away in another classroom away from his peers simply because he's different. I've had a hard time trying to request this meeting, as everyone is away. The new prinicipal is on some kind of principal's retreat, the vice principal doesn't start until the 10th... So there's no one to ask! Ok, nothing I can do I guess, and really trying to set it up early was for the school's benefit anyway. I thought the earlier it was done, the less hectic it would be for them, but as long as we have it before the first day of school, all is well. We'll see.

I also left a message with transportation to make sure Jaymes' safety harness was ordered and will be ready for the first day of school. There have been so many mishaps and issues with the bus situation that I really want to be sure everything is set ahead of time. I'm sure it will be, they seem pretty good over there.

Anyway, that's what we've been up to. Using our words, collecting forks, calling to get school stuff ready... Oh and potty training Sierra, who is now a big girl wearing panties!