What I Learned from a Series of Crappy IEP Meetings: Part one

Team means team…

The single most important thing I have learned though all these meetings has nothing to do with tactics, with laws, or with evaluations. It isn’t something that had to be deciphered out of a bunch of legal mumbo jumbo, and it wasn’t even anything all that complex. But as simple as the concept is, it had not dawned on me- even after a couple years worth of meetings!

I didn’t realize I was a part of the IEP team. I thought I invited as a courtesy, and that the group of big talking, well dressed school staff were the IEP team. I didn’t know that as part of the IEP team, I was an equal. I didn’t know that I could disagree, that I could push for things, or that I could have any input on the goals and specifics put into the IEP. I also did not realize I could bring backup to the meetings.

As the parent (or parents), we have a unique perspective and intimate knowledge of our children. We know what makes them happy, what ticks them off, what they care about… We know why they do some of the things they do. We can tell when they aren’t feeling quite right, even if only because they flap their hands a little more slowly than usual. We know when they are afraid, by the twitching of their lips and the snarfling sound coming out of their nose. We can tell when they are going to lose their cool, just by how they are holding our hand. We live with these kids. We know what makes them tick. And because we have that huge advantage on our side, it is our responsibility to speak up for them when school staff may or may not be able to glean anything from those minute little changes that to us, are as obvious as a flaming chicken in a tree house in the middle of August.

On top of that, most of us spend a lot of time taking our kids to therapies. So when the school can’t figure out how to make little Jaymes sit still in his seat, I can think back to that last OT session, and remember that the OT was able to get Jaymes to sit and complete a puzzle by plopping him in a beanbag chair with a weighted lap blanket. From my experience, few teachers immediately think “oh, he won’t sit still. Where’s that beanbag chair?” But, again from my experience, many teachers will be perfectly happy to try that out if the parent suggests it. We cannot expect teachers to immediately jump to creative, “outside the box” ideas every time there is an issue. And since we know what has been working for our kids, and we’ve had awesome therapists who have explained the how and why of it all to us… Well, again, it is our responsibility to share that information. Unfortunately, we all run into teachers who know it all and will not bother with trying- but if we know something works… Well, the squeaky wheel gets the grease. Eventually, they will be sick to death of hearing about that beanbag chair and weighted blanket and will try it out if only to shut us up. And it might do the trick and solve the problem. Or not. If not, we move on to the next idea. And the next. And the next.

We know our kids. I think it can safely be said that if the parent thinks a particular IEP goal is ridiculous, then that parent is well within their rights to try to nix it. That could be because the goal in question is too difficult or too easy. The goal could also be too stupid. An example of this would the one on my son’s current IEP as a social skills goal that says “Jaymes will learn his classmates first and last names.” Memorizing names is not a social skills goal. It’s a pointless memorization taking up room where a real social skills goal could be. Play skills, conversational skills, even just basic “how to behave in the regular kindergarten classroom” skills.

I have found that given a good enough explanation of why the goal is inappropriate, and offered a more suitable goal instead, the IEP team will usually not fight it too much. And if they do, holding out and arguing long enough can be useful. Just remember that parents aren’t always right either… If another member of the team can explain why the goal is appropriate, you aren’t losing anything by agreeing. Only if you actually agree, of course. Nothing wrong with asking for detailed explanation and the appropriate definitions if needed, either- even if you can actually see the teacher’s hair going grey as she breaks it all down into whatever size chunks it needs to be broken down into.

Finally, remember that (beyond what the state requires in the way of school staff) the IEP team can include whoever knows that child, or can offer support or a different perspective. That means other family members, outside therapists, advocates, parent educators, friends. Anyone who knows the child and can contribute positively. By positively, I mean that I would never in a million years bring my mother-in-law to an IEP meeting. I may be a pain in the rear, but even I know that one would be crossing a line.

It’s nice to warn the school ahead of time if you’re planning to bring in slew of people (or just if you’re bringing an advocate- that announcement tends to have a less than cuddly reception, but is infinitely worse when you just show up with one- ask me how I know…) as a courtesy, and so that there will be enough room for everyone! You may well still end up in a tiny, windowless, airless office with fifteen people crammed elbow to elbow… But at least the odds of a less snuggly environment improve with notice.

IEP meetings are not about the school, not about the parent, and not about “us” versus “them.” IEP meetings are our kid’s meetings. As the parents, we have the right to take the reins and help direct that meeting without feeling intimidated or unimportant. Without the parent, no IEP team could be complete.

It is so hard to go into those meetings feeling like you’re on the same level as the “professionals.” It’s something I am still working on. But until I accomplish that whole self confidence thing, I do a damn good job of faking it. As our wonderful ECAC parent educator says, I’m building that spine- vertebra by vertebra.

Introduction to "What I Learned from a Series of Crappy IEP Meetings"

I have learned a lot about IEP meetings since Jaymes started going to public school four years ago. A lot of what I’ve learned, I learned by totally screwing up. Some of those mistakes were no big deal, some of them were huge. All of them taught me something.

I remember the first IEP meeting I ever attended. Jaymes was three and just starting in Pre-K, and I had no idea what the meeting was for, or what it would be like. I was very nervous, as sitting in a room full of people with college degrees and years of teaching experience was incredibly daunting. I was so nervous, in fact, that I did not say a word. I listened, I nodded, and I spoke only when directly asked a question. I assumed that they knew best, and that I was only there as a sort of representative for my son. I had no idea I was actually part of the team, and that I had just as much right to speak up as anyone in the room.

Throughout Jaymes first year of school, I continued to not have the slightest clue what an IEP meant. I doubt I even read the actual document. At one point, Jaymes was having a lot of weird unexplained fevers. Though he saw the doctor constantly and we had a note saying that he could stay at school unless the fever went above a certain reading, the school called me regularly to come pick him up. At the time, I assumed that an IEP meeting would be the appropriate place to bring up this issue. Thinking I was being super smart in figuring this out, I asked for the meeting. And I got it. Boy was that embarrassing.

When we moved to North Carolina, I still didn’t really understand much about the process, the meeting, or the document itself. We had a couple meetings where I nodded yes and signed the appropriate places, and that was that. But then when Jaymes was in his second year of Pre-K at his current school, one of the school staff handed me a flyer for a parent workshop done by the Exceptional Children’s Assistance Center. I am so, so very glad I got that flyer.

I went to the workshop, where I learned a whole lot about my rights and responsibilities as a parent in an IEP meeting, and in the school setting in general. I learned that no, all IEP’s are not cookie cutter documents, and that YES, parents have just as much say as anyone else does in the meeting.

The funny thing was that the week prior to the workshop, Jaymes had had his Kindergarten transition IEP meeting, where the team decided that Jaymes would be put in one of the self contained AU (I forget the new, more PC name for the AU rooms) classroom with no interaction with his nondisabled peers. After the workshop ended, it dawned on me that I had seriously screwed up. I started talking to the presenter, Judi Archer, about how I’d totally messed up the meeting and I had no idea he could get time in the regular education classes or that he could get such-and-such services. I was really frantic about it, in my head, I’d ruined the school year for my little guy without it even having begun yet.

Judi was amazing. She gave me a long list of things to discuss with the school. She explained what was reasonable to ask for, and what was not. She filled my head, and my notebook, with a wealth of information. It was really incredible.

That was a turning point for me. I requested another meeting. As I recall, it didn’t go well… I looked through the blog archives trying to find it, but I got impatient about fifteen minutes in and gave up. If you want to read it that badly, it should be in April, May, or June of 2008 or 2009. I honestly cannot remember.

Anyway, the point of this post is to take a look back over the last few years, and to really think about how far I have come as a mom, with all the wonderful people who have helped me- in particular Judi and Doreen at ECAC. Thanks to these great ladies, I understand (mostly) the meetings. I can read the actual IEP and make sense of most of it. I’m not afraid to speak up anymore, because I know what is and is not reasonable. I know the whole “knowledge is power” thing has seriously been overdone- but in this case, it is SO true.

While I have a long way to go and a ton more to learn about the whole IEP process, meetings, paperwork, and dealing with the school in general; I’ve decided that I’d like to do a series of blog posts offering some of the basic things I have learned, that have helped me get Jaymes the best education possible with the least amount of hassle. So consider this an introduction. The “What I learned from a series of crappy IEP meetings” series should be fun for me to write, and may be helpful to someone else out there just starting out on the crazy journey of negotiating (arguing?) with their local public school system.

That school update I should have written two weeks ago

You may have noticed this blog has remained pretty much untouched for the last couple of weeks. First, I managed to sprain my elbow, resulting in a really ridiculous looking sling and quite a bit of pin. Then, almost exactly one week later, I sprained my wrist. This resulted in my getting the pleasure of wearing a wrist brace for the next few weeks, in hopes that things will fix themselves and I don't have to spend more money on doctors visits. Not surprisingly, not having the use of either arm kind of made for trouble typing. And writing. And eating. And driving. But now that I ditched the sling, I have decent use of my left hand, and the brace can come off for brief periods so I can type/eat/etc. I'm horrendously behind on school work... So what am I doing? Writing a blog post. You see where my priorities are. Shame.

We had an IEP meeting a couple of weeks ago, to discuss the new schedule for Jaymes for school and to try and work out some of the issues I have had with his teacher. Prior to the IEP meeting, I had a couple meetings with the principal, but as much as I like her, it's her job to defend teachers- and she does it well. Even when they are wrong.

I wanted Jaymes out of his current classroom for a lot of reasons... The biggest of which is the fact that the teacher was punishing him for every little thing, taking away "stickers" or "smiley faces" and he would come home horribly stressed and unhappy and scratch his face bloody. I did actually try to work this out with the teacher before I brought the principal into it, but this particular teacher is one who clearly knows it all, and refuses to acknowledge that maybe someone else might have some valid ideas and thoughts on a situation. She seems very set in her ways, unlike last year's teacher who was fantastic and creative. Mrs. C worked like crazy with the school OT to make things work for Jaymes- and he did well with that. This year's teacher... Yeah. Not half the teacher Mrs. C is. I finally gave up trying to deal with the woman, the constant condescension and nasty back and forth both in person and in notes to school was just too much. We'd get notes home saying that Jaymes lost stickers because "he made too many messes," "he talked at lunch time," and equally ridiculous rule infractions. When I explained to her that Jaymes gets so upset over the stupid stickers that he hurts himself, she told me that "he has to follow the rules like everyone else." Fair enough, he DOES need to follow the rules. But, when he is so distraught over a stupid sticker or a smiley face that he shreds his face bloody over it... A change needs to be made. A little compassion would have been nice, at the very least. All I got was that he has to follow the rules, then a few times denials that he even does it. Despite having had therapists outside school see it, the school bus driver see it, the teachers and staff at school see it... I mean really, what parent would make something like that up?!

Anyway, the straw that broke the camels back... One day he came home with a note that just said something like "Jaymes had a bad day." So I wrote a note back, asking what it was specifically that made it a bad day, so we could work on the issues at home. Instead of acting like a normal human being, and writing back "Jaymes had some trouble sitting still, and he ripped a book," I get a TWO page letter, literally listing all the things Jaymes does wrong. One part of the letter was written by the teacher, and it's no coincidence that this part of that letter was written in such a way that no one could take offense to any part of it... The other, longer part was written by the male teacher's aide, who said things like "Jaymes is frequently found wandering the room" "ripping things" etc... The letter ended by telling us that without the parents reinforcing things at home, the school cannot accomplish anything... Not the best thing to tell me. This happened on a Thursday, and luckily for the innocent principal, she was away until Monday. Had she been in while I was that upset, the entire school (and half of the city of Kernersville) would have heard me bellowing. I have NEVER been upset enough with any school to raise my voice. As many of you know, I'm actually pretty chicken, and have a lot of trouble speaking up. But I was ready to blast someone.

By that Friday night, I was doing my normal "oh, what if I'm overreacting, what if it's all in my head" thing, and was afraid I'd end up backing down. We decided it would be nice to take the kids to McDonalds for dinner, and I am SO glad we did. Sitting at the table next to us was the mother of another little boy in Jaymes' class. I don't know any of the other parents, so I didn't recognize her- but she recognized Jaymes and we got to talking. I didn't want to bring up my issue with this teacher in case she was a huge fan of her (that would be awkward!), so imagine my surprise when she started ranting about the teacher- FOR THE SAME REASONS! That someone else had a child coming home distraught, and hurting himself over being nitpicked the same way Jaymes was being nitpicked... well that was a turning point for me. In the past, whenever I have had a big issue with the school, I've felt guilty advocating for Jaymes. I don't like to be a witch, and I don't like to make waves. Thanks to this whole mess, I don't feel guilty anymore. I feel empowered. I am SO happy we went to McDonalds that day, or I would never have known and might have dropped the whole thing.

At this point, I pulled Jaymes out of school. He stayed home for two weeks. I met with the principal and tried to make my case... But her opinion is that this teacher is just "blunt, she says it like it is." Fair enough, she is entitled to her option. But in the real world, there is a five letter word that describes the teacher perfectly- and it is not "blunt."

Jaymes didn't end up with two weeks of unexcused absences, the timing was convenient that he got a severe ear infection right around that time and the ENT doc asked me to keep him home.

In the end, my request for him to change classrooms was denied. Not thrilled about that. I don't understand why the school stands behind teachers like this. There is a reason this particular school has a horrible reputation (in the autism community, l0cally) as one of the worst schools in the county for kids with special needs. They're one of the best for regular education- the school is beautiful, the staff are fantastic. Their scores are through the roof. You would think that they would want to work to rebuild a decent reputation in the weaker section-the EC classes. What I have seen is that unless a parent pushes, the school wants to warehouse these kids in self contained classrooms that do not even go to eat lunch in the cafeteria. They stay in those classes until middle school, where they usually end up at Lowrance Middle- a school that is (I believe) 100% EC (special ed). I have a friend with a son who started there last year, and one day his son came home with bruises from elbow to shoulder. No way in hell is Jaymes ever going there. Which is why I push so hard for him to be included in the regular ed classes too- he needs every chance he can possibly get. That school is where summer school is done, and last summer I had one of the summer staff tell me that Jaymes will never have to go to Lowrance. He's capable of more, with the proper support.

The thing is, with last year's teacher, we learned how to work together, and it ended up really, really good for Jaymes. While I doubt a lot of the other kids are getting the best education, I knew Jaymes was. This year... Not so much. Seems like he has lost more skills than he has gained, and that he's gained lots of negative behaviors as a result of being in the class with kids much lower functioning than he is. The lack of supervision is the big issue there too- if he had adequate supervision, the issues would be minimal. But even the teacher's aide who wrote me that letter confirmed what I already knew, in saying that Jaymes is often "found" wandering the room. Found? Really? That's like me saying I "found" Jaymes on the roof. I already knew this though, because all school year he has come home with his backpack stuffed with school property. Books, toys, pencil grips, etc. Things he should not have had, things they didn't even know he had put into his backpack. Now, this is a classroom with three staff and seven kids. It's not a big room, and for Jaymes to fill his backpack with stuff he would have had to walk across the room, get his backpack of of his cubby, walk back across the room, fill it up, then again cross the room to put the backpack up. How was he getting away with this? He's sneaky, and he's fast- but he's not The Flash.

In the IEP meeting this issue came up, and it sparked the beginning of a nasty back and forth between the teacher and myself. When I mentioned the lack of supervision, evidenced by Jaymes stealing, the teacher's response was to turn it back on me by saying "Well I haven't seen YOU return anything yet."

For one thing, I've tried. dozens of times. On top of the stolen stuff, I get other kids soiled underwear (Jaymes is in diapers, he doesn't wear underwear) and other clothing sent home. Sometimes I get other kids IEPs (can we say "confidential document?"). Sometimes I get other kids lunches. I try to send things back with notes, and they come right on back to me because they don't look in the backpack. Just this week, we got home some kids dirty underpants in a baggie. I stuck a post-it note on them that said "not ours" and sent them back. Guess what was still in the backpack the next afternoon? You guessed it. They're sitting in the backpack now, awaiting another attempted return. At some point, it got ridiculous to try to send home all the stuff he came home with. And being treated like crap by the teacher makes me a WHOLE lot less likely to do so. I'm sure not going to drive the giant pile of stuff over there and hand it to her myself- why do the extra courtesy, when I'm treated like that?

Secondly, why their stuff has not been returned is not the answer to the question I asked. It's a less than clever way to turn the heat off of her, and onto me. Except that I don't really care, and it made her look ridiculous. If they want their stuff back, after all the times I've tried to send it back in, they can drive on out and pick it up themselves. I didn't let him steal it to begin with- if he'd been watched, the stuff would still be in the classroom, where it belongs. Jaymes is punished every time he steals, so the lesson is still being learned.

Anyway, the IEP was a joke, and I was really disappointed that the principal didn't see a reason to put a stop to the back and forth nastiness. The teacher seems to need to have the last word on everything- right down to tiny stuff. At one point the principal and I were talking about limiting Jaymes' sugary food intake... I said that I try to keep sugary treats to a minimum because they make him nutty- which they do. Teacher pipes up with "Well I just read a study that said sugar doesn't make kids hyper." Uh, ok. Congrats on that. How about I spend a weekend stuffing Jaymes with candy, then see how his day the next Monday goes? Really, who argues about a parent wanting to limit their kids candy consumption? It's just petty.

I did end up speaking to the head of the EC department for the school district, because Jaymes was being punished for things that are directly related to his disability- and there are laws against that. He put me into contact with the zone EC supervisor... She called and left me a message, saying that she'd spoken to the school, and was told we had a great IEP meeting and that everything was solved. That if I had concerns, to go ahead and call her. I'm not great on the phone, so I emailed her. I felt like it needed to be said that the issue was not totally solved, and if we had a great meeting, I must have been at a different one. I have never been so furious or frustrated at an IEP meeting. The only thing that meeting accomplished was giving me some definitions I needed. Prior to the meeting, I'd cooled down in regards to how upset I was at the teacher... by the end of the meeting, I had a strong desire to wallop her across the head with a Mackerel. Which apparently is not legal. But the imagery made me feel immensely better. As we walked out, I made it clear to the principal that I want nothing at all to do with this teacher. I don't feel she has a thing to offer Jaymes (or any other child, for that matter), and I'm over the nastiness. She and I will not accomplish anything by meeting, so I'm just going to deal with the good teacher, Mrs. C.

Which brings me to the positive part of the whole mess. The principal did decide we needed to change something. She had the current teacher and Mrs. C work out a schedule together, and I actually really like it. Obviously, I don't want Jaymes anywhere near the one teacher, but this is the next best solution. Basically, every 30-45 minutes he switches between the current teacher's room, Mrs. C's room, and the regular ed kindergarten. He spends the majority of time with Mrs. C and Mr. H- and much much less with his original teacher. Thank God for small miracles.

Jaymes has come home every day, with a huge grin on his face. He tells me "Jaymes went to Mrs. C's class!" or "Jaymes love Mr. H!" He doesn't hurt himself. He doesn't scream and cry. He doesn't beg not to go to school anymore. He is a different child. I think that speaks for itself- the issue was the teacher. I have heard she is retiring, hopefully that is true. If she is, I'll leave things as they are this year, knowing he won't be dealing with her next year. If she will be here, there will be an almighty explosion if the school thinks Jaymes will spend ANY time near the woman next year.

The thing I hate about all this is that Jaymes was retained for a reason. I wanted him to get extra time to catch up and get ready to go out to the regular ed first grade next year. Half the year was wasted trying to work with a teacher who should have retired years ago. THAT frustrates me beyond belief.

So it's been one big, ugly mess and one hell of a headache. The teacher hasn't learned a thing from this, and the school has done nothing to show her that she needs to learn a little tolerance and compassion- or find a more suitable career. Perhaps as a high school teacher or a parole officer.

But in the end, Jaymes is better off than he was, and I am grateful to the staff who worked this new schedule out, and to the principal for meeting with me time and time again to discuss it. And really, I'm actually grateful to the teacher too. Without her tremendous failure at teaching Jaymes, I'd still have trouble speaking up at IEP meetings. I don't feel guilty anymore, and I don't hold anything back. That's a gift, especially to someone who has been "building a spine, vertebra(e?) by vertebra(e?)."

Another day this week I'll scan the now famous two page letter that set off the explosion and post it up here. I'm curious whether others who do not have a stake in the situation will get out of it the offensiveness that I did.

How cool is this?!

Check out this article! Yes, I know some is cut off, blame my evil scanner.

Jaymes visits Bumper Jumpers, mommy gets burned

As a belated birthday gift from his grandmother, Jaymes was treated to a fun day of bouncing at Bumper Jumpers, in Greensboro. I thought that because the gift was belated, it would not be too horrible for the post talking about it to be belated as well.

We’ve been to Bumper Jumpers three times now, I think. The cool thing about it is that parents get to play too- unlike those stupid, incredibly fun inflatables at the fair that grownups don’t get to do because we exceed their silly weight limits. The place is a LOT of fun, although their air conditioning is very minimal and the staff are less than autism-friendly. This was the first time in the last year (I think) that we’d been, and there were a couple new bouncy houses. The coolest one (and naturally, the one Jaymes insisted doing repeatedly) was an obstacle course, styled along the lines of Nascar.

Sadly, these bounce houses are really styled for kids, or at least incredibly bendy skinny people who are in pretty good shape. Did this stop me? Of course not. It probably should have though!

The kids bolted right into the Nascar bouncy, squirming between the pit of little inflate-y squares that constituted the beginning of the obstacle course. I figured I could walk through, by keeping my legs squeezed between the very narrow path between said square things. This was not to be. The space was really too small for adult feet, and served only to bind my legs together and take away what little natural balance I ever had. The result was my best impression of a turtle, on my back surrounded by little inflated squares. No amount of flailing did me any good, so I got the bright idea to squirm snake-style through the rest. At this point, the kids were long gone and there was very little hope of catching up.

Once I extracted myself from part one of the ordeal, I came face to face with a tunnel that would have been plenty tall and plenty wide- had it not been lined with mesh of some sort that made it one heck of a tight fit. Slithering, again, proved to be my only option. Upon reaching daylight at the other end, I could not help but think that this was probably how babies felt as they come into the world. My first view was of Jaymes, paralyzed with laughter at my predicament. That is, until he realized I was not actually stuck. Then he bolted with an evil giggle.

The tunnel opened out to an open area that thankfully was tall enough for me to stand up, and wide enough for me to move. The only issue was the eight to ten foot inflatable climbing wall that loomed above me. Of course my kids (and some very tiny little toddlers that had clambered past my flailing turtle impression earlier) had no issue climbing up there. I think that little children are like mountain goats. Me, not so much.

It was with great effort (and much labored breathing) that I dragged my out of shape, arthritic body up the ladder. Being short of breath after my exertion, I sat at the top a minute to breathe. Neither kid was in sight, they’d long ago gotten bored with my pitiful attempt at keeping up. I wasn’t even exciting enough to laugh at anymore! I decided I needed to hurry up and find Jaymes before he bit a hole in something or assaulted a tiny child (or grabbing some random man to see if he might be wearing a belt) and hopped over the edge to slide down. I kind of expected to have a nice, fun slide down. It was to be the one peaceful, non-exhausting part of the bouncy house. Except apparently, those slides give some nasty rubber burns. Down I went with a WOOOOSH. My arms made friends with the surface of the slide, and I ended up with some very impressive bouncy house slide burns!

Really though, the day was a lot of fun. The kids had a ball, and I got a good workout. I will say that Bumper Jumpers is not exactly arthritic mommy friendly!

that belated birthday post

I meant to do this post a long time ago. Like actually around Jaymes' birthday. Obviously, that did not happen. Meant to write it last week. Didn't happen. Meant to do it a few days ago... Again, didn't happen. My official excuse is a lack of time, and it's actually a good excuse given the insanity that has been my experience with Jaymes' teacher this year. I'll wait to post anything about this one until I have some idea of how things are going to end up, but let's just say the whole school situation has blown up into one hell of an unpleasant mess. Anyway, back to the point.

Jaymes turned seven back on December 30th. It was a day of mixed emotions, for sure. Lots of good, and some sad too. Also, a little bit of misbehavior. His birthday this year fell on a Thursday, meaning a regular old day. We decided not to have a party, and instead use the money that would have gone to a party for getting Jaymes a slightly-too-expensive handheld game system. We originally were going to go with the Leapster thing, but looking at it I wasn't sure Jaymes would be able to figure it out. We ended up going with the Fisher Price IXL, which was about three times more expensive, but really cool. Jaymes always enjoyed playing the demo IXL that Target has, so I knew he'd be able to figure it out. Until we got it and started setting it up, I had no idea how cool it is! Each game is actually a couple of games, a coloring program similar to MS Paint on the computer, and a story with options for reading alone, or being read to. The games aren't cartridges that are stuck into the player- rather, they are computer CDs that you install then attach the game system via USB cable and transfer the games over. This means that games can constantly be rotated through so Jaymes doesn't get sick of them.

Not only does the IXL play games... It's also an MP3 player and you can also upload photos. I uploaded a bunch of Jaymes' favorite Raffi songs onto it, along with some photos of him at Halloween. He has the Monkey game that the system came with, a Spongebob one, and a Handy Manny game as well. He loves to play his music (specifically an incredibly annoying song, "Down by the Bay") while doing the drawing. He loves the story modes, and will actually spend hours giggling and playing the various games. I hope the thing is built tough though, an attached stylus is used and he pounds the living heck out of the screen.

Obviously, Jaymes thought his gifts were pretty cool. He also got a portable DVD player and a couple movies for when we're at appointments that take forever. Have not gotten a chance to use that yet.

I used my Christmas gift, the cake pan that makes perfect 3D trains, to make his birthday cake. Not only was it lactose free, but it was awesome. I made a "rainbow cake," something I looove making because it's so eay and so pretty. Basically, you divide the batter into six or seven small bowls and make each bowl a different color using food coloring. Then you slop spoonfuls of each color in together, creating what cooks into an edible rainbow. I then iced it up, and decorated each train with gel colors and candy. It turned out REALLY cool, and it was a lot of fun. Jaymes about had heart failure when he saw it. I shoved candles into each car, and that really made it cool too.

At some point, I think Jaymes thought we were not going to sing to him. So he stood up on a chair, and sang Happy Birthday to himself. It was really cute. We sang it a second time, which he enjoyed just as much as the first. He blew out his candles, and probably splashed the entire thing with mouth bacteria. He enjoyed that a LOT. The candles, not the bacteria.

The realization that my baby is SEVEN is a little crazy to me. Seven is kid-age, he's a boy and not my little baby. When they say time flies, they're not kidding. I started thinking about that, and got kind of depressed. It's really hard for me to see Jaymes as a seven year old, because he's really functioning at a lower level than my four year old. It's hard to see him as a big kid, when he's only 38 pounds. It's hard to see him growing up, when he is still in diapers, and still wants to be carried. I guess the hard thing for me is that I thought we'd be so much further by now. All these docs and therapists have skirted my questions about where on the spectrum Jaymes is... Which in a way made me feel like maybe in a few years he would grow out of it. Obviously that is neither realistic, or the case here. I don't even know that I'd want it to be. I don't know. But watching the seven year old down the road as he rides his little dirt bike and plays sports and has real kid conversations and friendships... How different Jaymes is really becomes painfully obvious. So I spent a bit of the day bummed out.

Then I started thinking about Jaymes gains, and how far he really has come. At two years old, he did nothing but scream and cry all day every day. At three, he screamed and cried and destroyed things. At four, he started talking. Slowly, first with just "cheese" and "popsicle." I remember video taping his barely intelligible pronunciation of "cheese" and being beyond excited. At five, he was giving us single words. At six, phrases. And now at seven... Full sentences a lot of the time. No, they don't all make sense. Yes, some of them are just echolalic. Some are nasty "shut your mouth, mommy." But then he sings Happy Birthday to himself. He walks up to me and asks "can I have more chips?" He runs by yelling "Jellyfish starts with J!" He knows most of his prepositions. He knows how to count to thirty (with a little stumbling around the teens) and how to spell his name. He knows how to ride a bike, and how to dress himself. He knows how to take a shower, and how to change his own diaper. He knows how to close the gate. He can draw a jellyfish with rainbow legs and a smiley mouth. He can help me cook. He can sing.

If I had been asked a few years ago if I thought Jaymes would ever do any of these things, I'd have laughed. I have long been guilty of underestimating what my son can do. But I've started to realize that if I assume that he can't, won't, do something- I'm not doing either of us any favors.

No, Jaymes isn't like the little blonde boy down the road, but that's ok. He has accomplished so much and come so far to become who he is now. His future holds a lot of struggle, but it also holds a lot of promise. I'm not ready to sit down and mourn the boy he could have been- I'm ready to fight twice as hard to get him every support and advantage he possibly can, to help him amaze me in a few more years.

Book Review: Behavior Solutions for the Inclusive Classroom

This newest book that I recently finished is a little bit different than the usual ones. Not only is it not autism specific, it’s the type of book that you don’t necessarily have to read all the way through. It’s more of a handbook that one can refer to when needed.

The book is called Behavior Solutions for the Inclusive Classroom, and is written by Beth Aune, Beth Burt, and Peter Gennaro. Interestingly, this particular book has a LOT of your basic OT related advice- because one of the authors happens to be an OT! I think it is really fantastic to get that perspective in. The book gives valuable information to those who may not have access to OT services.

The OT point of view is so important, particularly in figuring out solutions to behavioral issues. As we moms of kids with autism know, behaviors can often stem from unmet sensory needs. Sometimes solving a behavior problem is as simple as providing a weighted blanket or handing a child a straw to chew on. Rather than focusing on consequences and rigid adherence to rules, the book really explains why certain behaviors occur and how meeting those unmet needs changes those things. In addition, ideas are put forth that offer a way to meet a child’s sensory need without drawing the attention of others and making the child seem different and thus less likely to end up being teased.

The book can be used by parents, teachers, therapists… Basically anyone who is working with a child exhibiting the behaviors discussed. And there are a LOT of behaviors. Most books seem like they focus on a small handful of things, leaving a whole lot out. The issues and their solutions can be applied to kids with autism, ADD/ADHD, mental health diagnoses, emotionally disturbed children, and those with various developmental disabilities. Some can even be applied to “normal” kids like my daughter.

This is definitely not the type of book you would read all the way through, then set back on the shelf. No, this one is meant to be frequently looked through. As it says on the cover “See a behavior, look it up!” I think that every inclusive classroom (or EC/special needs classroom) should have a copy. I’d offer my copy to my son’s school if I thought they might read and apply some of what they read. The way the book is laid out makes it super easy to flip around, find the info needed, and move on to the next thing. Suggestions for solutions are written very succinctly, taking a couple minutes at most to read- rather than taking up too much time in the midst of a situation.

Behaviors discussed include out of seat behaviors, fidgeting, hand flapping, covering ears, running away, putting head down, trouble with homework, losing things, missing assignments, poor handwriting, trouble following directions, saying rude things, clothing issues, talking too much, decision making, lack of eye contact, outbursts… The list goes on and on.

Not only is the book chock full of helpful information that can be applied to many different diagnoses, it is also fantastic because the tips range from very young or very severely impaired children, right on up to teenagers and higher functioning kiddos. There is great information for any child, any age, and any disability.

This book will definitely find itself opened time and time again, as I check out new behaviors and get ideas for how to deal with those. I see myself sharing it with friends too. The writing style is friendly and not overly professional, making it an easy read. I am really impressed with this one.