it's a lot like a good smack in the face with a frozen salmon

I know I have not been blogging much at all, despite school being done for the summer (mine, not Jaymes's) and everything settling down somewhat. There has been a lot of craziness going on, and both myself and my husband are really coming to realize that no matter how hard we push Jaymes to get out there with the other kids, or how hard we push the school to accept him, Jaymes is autistic, and we don't have a happy ending at the end of the line somewhere.

We never grieved when he was first diagnosed. I think I dove into my researching in order to hide from the realization that there is no cure for autism, and that our lives would never truly be normal. I chose blissful ignorance, and my husband went with denial. It's worked well for us, up until now.

There isn't a lot left for me to research. I still look into legal stuff, as far as school goes, because no matter how much I learn, I need whatever I can get for these damned IEP meetings. But beyond that, all I really have left is reading stories of other families and their challenges with autism. Lately, for some reason, even the heartwarming stories make me want to cry. Not in a good way either. I don't know why. It just seems like for the both of us, the reality of autism has become so big and obvious that we can't avoid it anymore.

Jaymes will be eight in December. He'll be in first grade, after two years of Kindergarten. He will never catch up to the typically developing kids, and no amount of mainstreaming him is going to magically transform him. The school won't hold him back every year, because at some point he HAS to go on whether he has caught up or not. He'll never bring home sports trophies, he'll never win a spelling bee. Our lives will never be "normal." I do not hate the things about Jaymes that make him Jaymes- the funny sounds are ok. The need to hold my hand is ok. The carrying around of some sea critter with tentacles is fine. I don't care if he's twenty years old and carries his Jellyfish. I really don't. The thing that gets me down is that there are so many situations he will never feel safe in, so many activities he won't be able to do for various reasons. There are so many friends he won't make, and so many special events he won't be able to participate in.

I am ok with my husband and I never living a normal life. It's hard, but it's the reality. What kills me is knowing that JAYMES won't be able to live a normal life. What happens to him if something happens to me? What happens when he is an adult and I can't take care of him? What happens if he is still in diapers, twenty years from now?

The thing that really brought this whole thing to the level it is tonight, would be the school play I was so excited about. When I got the note home about it, I was both shocked that he was being included, and elated because I would get to see him in his play. I never thought I would get to go to a school play, sit down, take photos, and clap for my kid like everyone else. That he was even involved blew my mind. That was thanks to his truly wonderful regular-ed kindergarten teacher, Mrs. Walter. Prior to this teacher, Jaymes had not been included in much of anything. I was just so excited to see Jaymes so excited about something that was so "normal" and such a routine part of life for his non-disabled peers. He'd been doing the play practices, and had been doing great. He came home telling me about the play. He was so excited.

We wondered what he would do in the play. We wondered what songs he would sing. We wondered whether he would actually sing. We wondered if he had any lines to say. We wondered if he would wear a costume.

We should have wondered about more practical things. Would it be too loud? Would the many, many kindergarten kids make too big of a crowd? Would Jaymes be ok with the music? Would the crowd of parents frighten him? Would he be able to sit still? Should we have turned off his hearing aids? How would they keep his attention on the task, and keep him from wandering off?

It wasn't Jaymes's fault. I should have thought of these things. I'm his mom, it's my job to make sure he isn't put in a situation that is too much. I totally failed him on that. He tried to handle it, he sat with the other kids for the first ten minutes or so. He spotted me, four or five rows of seats back, despite my hiding behind a large bald gentleman. He made a break for it as his class filed in, then again a few minutes later. I brought him back, and told him to sit. He went, he sat, he popped up, ran to the microphone, and talked into it for a second until teachers put him back down. Then he got back up, and ran to me. This time he was starting to cry. I sent him back again, this time with promises of ice cream. He went back, he sat. As the first bunch of singing began, he RAN for me. I picked him up, and he was crying and shaking. He was covering his ears, and he desperately wanted out of the gym. We walked out into the lobby, and he sat there and shook and cried. Then I cried. And we looked like we were both insane. The vice principal tried to make me feel better, pointing out how well he had done at the practices. The sweet music teacher who teaches the EC classes music came over, and tried to make me feel better. She told me all about how hard these things are, even for normal kids. She was right, but I had to have my self pity moment.

I felt so horrible; both for putting Jaymes in an unfairly complicated situation, for Jaymes having "failed" in front of everyone, and for myself not getting to see him in his play. I know that Jaymes did the best he could, and he certainly did not fail anyone. It just felt like I spent so much time in the last few years pushing the school to accept Jaymes, and trying to show them that he could handle himself if he were included. It felt like I set him up to fail.

I didn't even know he was in this play until last week. I got a note home about it and I was so excited and so proud of Jaymes. I felt like it was a miracle, that I would get to have a special moment (one that many parents take for granted) I never thought I'd see. I know it's totally selfish to think this way... But I'm human and not above a little selfishness and self pity.

We walked around the school, which was empty and very quiet. Jaymes loved this. He stopped crying, and he stopped shaking. We came back up to the gym doors, and he started shaking and clinging again. Obviously we were not going back in there. Outside the one set of doors, there are a couple squishy couches with pillows. Jaymes laid down on one, and covered his head with a pillow. After a few minutes, he calmed down and emerged from his pillow cocoon and played with my iPhone. The boy loves his apps and he knows how to use the thing a lot better than I do. I was proud of him for being able to sit out there, where there was still a lot of singing and music from the play and clapping and everything else. He managed to sit there for the rest of the play, and then went back to the classroom with his group. By then he was happy, and calm. I was far from happy or calm, but I was glad the kiddo had managed to stay calm. When the gym emptied out; except for a handful of parents, kids, and staff, Jaymes and I went back in. He didn't want to at first, but once he realized it was quiet and empty, he was ok. We walked around and he looked at the three piggie's houses up on the stage.

When we got to the car, Jaymes hopped into his seat and said "can we go to Walmart? Jaymes want Chicken-In-A-Cup." So off we went, to Walmart.

I'm torn on this, feelings-wise. We handled the issue, Jaymes still listened to the play and sat still. Jaymes went back into the gym. It wasn't the disaster it could have been- he could have decked the kid next to him, or pulled down his pants or something. He could have started screeching on the stage. He responded very appropriately, considering how overwhelmed he was. I'm proud of him for knowing he had to get out and seeking me out.

On the other hand, it breaks my heart that this was so hard on him. I wish I'd gotten to see him enjoy his play, or even sit there without singing. I really wanted to feel like a normal, ordinary old mom. I wanted to brag about how well Jaymes did. I wanted people to see that he could do it. I know most of this isn't logical, nor is it fair to expect these things from Jaymes. I am far from upset with him, and I am proud of how he handled his fear. I'm just sad. It feels like a slap in the face, like he was just doing too well and maybe God felt the need to give me a very clear reminder than Jaymes is autistic, in case I'd forgotten.

I guess they're aware now...

First of all, may I just say, happy autism awareness month! Though life has kept me far from the computer, Jaymes and I have been making our own unique brand of awareness. I will share that here, and once the massive mountain that is my school work due in the next couple weeks has gone down some, I will share the long version of the many, many things that have happened over the last couple months. I will quickly mention that Jaymes was finally moved out of the class with the teacher from hell, and he is doing VERY well now that he’s in class with a teacher who knows him, can teach him, and cares about him.

He’s far from perfect, but he’s doing so much better than in the other class. Of course the down side to that is the fact that this school year has pretty much been a waste of what little precious time Jaymes has to catch up. I’m thrilled to have the issues solved, but there’s what... Another month and a half of school left? And then what? I’ll get into that personal rant once the aforementioned mountain of school work is finished.

Jaymes is having some major issues with touch- he cannot deal with other kids touching him. Even so much as a tap on the shoulder and Jaymes is convinced that he has been viciously attacked- and he attacks back. We are working hard on this. He bit a little girl in the regular ed kindergarten class, quite badly, and I’m very unhappy with that. He’s lucky he did it at school, because if he’d done it at home, the gates of hell would have opened. We do NOT bite. But, that’s another rant for another time.

Back to our awareness efforts. Check out this fantastic article, featuring my cute little man, in our local paper for autism awareness month. It totally made my day. I love being able to reach out to my local community. With this blog, it’s mostly NOT local folks reading. I am thrilled to help anyone, but it’s especially neat to share resources locally too. Anyway, I had to cut the article apart and scan it in three pieces, so I hope it’s reasonably readable. Enjoy, and soon my rantings will be back, along with some new book reviews and maybe even a few book give aways!

Alive... Does that count for something?

(Last photo is my mom and Boo at the Cultural Center in Port Charlotte, FL)

I hate that I have been away from the blogging for so long. Seems like everything has gone to hell in the last month. We found out my mom is very sick, and she recently was released from the hospital after an 8 hour surgery. I have not been able to see her in the last 3 weeks, because I had pneumonia from hell, and now currently am having dizzy spells and nausea. So I've not been online much. I'm about a month behind on my school work, and am probably failing two of my classes, but am having trouble getting up the desire to do much about it yet.

I had to make the decision to put my old dog Boo down on Friday. Technically she was my mom's dog, because she stayed with her when I moved out after high school... But this dog was my best and only friend as a messed up teen.

They sedated her first, at my request. Then I put a huge pile of dog cookies in front of her, and she scarfed them down as the needle went in. She died in mid-chew. I guess dying while eating the dog treats you couldn't normally have(dietary restrictions), is a good way to go. I made an ass of myself crying, but I knew that would happen.

I can't believe she is gone. Boo was part of my life from when we got her when I was 11. She was my only friend, and the only reason I survived my awful teen years. she brought joy to hundreds of people as a therapy dog, and she was my best friend.

We had a rough night on Friday, but my Lab, Echo seemed to know it (ironic, because while she is a wonderful dog, she is about as intelligent as a dandelion) and was super cuddly and snuggly. I relented and let her sleep in the bed with me, and she was really a comfort. I hate this part of having animals- the losing them. and in the last 3 losses I have had, every one of them went sort of the same way. I'd keep it together until the needle was in, and at the moment the vet was about to push the syringe in, I would think to myself "take in (insert animal name here) still breathing.. Because it's going to be gone in a second." That split second between life and death really sticks in my mind- it's something you just don't forget. I hate the feeling of feeling your pet go totally limp and just sink down while you're petting... I always want to keep petting because it makes it a little less real.

One thing I always did for Boo, from the time she was a puppy... You know that little tiny flap part of the dog's ear toward the back, it's super soft and just big enough to get one finger between the folds... I would get both my hands going with fingers in that little fold and scratch- she loved it. I did that all the way to the vet's yesterday (with the non-driving hand), and all through everything. I just kept thinking to myself "you'll never get to do it again." I hate the finality of it all.

Boo was the once in a lifetime dog. She was awesome in every way. I did everything with her. We did doggie drill team, obedience trials, agility, some breed showing. We swam, and walked, and did everything together for years. She was my closest friend, I loved her more than anyone. We walked from our house, to the place I boarded my horse one night after a fight with my mom... The walk took me a good five hours. It was normally a 30-45 min drive, down the highway. Somehow I did not get us killed. We walked through a construction zone in the country in pitch black, and somehow I didn't break a leg walking into ditches and holes, because I just followed Boo.

We won a cool pet trick competition once, at a fun show. You had 30 seconds to show off your trick. I taught Boo to do a series of three tricks, fast in a row. She'd shake hands, then do a high five, then jump up on her hind legs and give me a double high five. It was awesome.

I dressed her up, I put glitter on her, I painted her toenails. She had jackets and sweaters, and a billion leashes and collars.

We shared ice cream cones. I took her to the mall and stores and everywhere (she was a certified therapy dog, and back then no one questioned it, she just got to go with me wherever.) and she got me over my terror of going to public places alone. Having her there made me feel confident and not afraid.

One time I got on a photography and photoshop kick, and I took all the lamps in the house outside at night to photograph Boo with the digital camera. I got her to hold a whole stalk of broccoli in her mouth, who knows why. I wrapped her in Xmas lights for Xmas cards. I put bunny ears on her, and one time I made her into a fisherman dog by sewing stuffed fish all over a dog sweater. she was covered. I got 2 sets of baby booties, the pumpkin kind for halloween, and a pumpkin top headband. She looked SO cute in her booties. Black and orange go well together.

As a young teen, 13-14 I would think about what I would do if she died. I would think to myself that life would be empty without her. Looking back, I had underestimated how much it would hurt to let her go. The only thing that makes it better for me is knowing, without any doubt at all, that she was suffering. Boo not being able to chase squirrels, leap into the air after tennis balls, and swim like a duck on crack... Well, that wasn't Boo. Lying around being half dead was not something I ever wanted for Boo, and I do feel some solace in knowing that I did what had to be done.

I'm glad I was there, but I'm sick over it. Losing Boo was worse than losing my dog Chancie, or my mare, Lucy... Because Boo was a part of my life from 11 years old. I'm 25 now. That's how long we had her. It's like one of the most important pieces of my life is gone, and every time I think about our exploits in the past, I feel like I'm dying inside.

I feel terrible about everything. For pushing my mom to let me put Boo to sleep, while my mom was recovering from major surgery. For being so sad, when she has not been my dog for so long... And I feel like I'm almost afraid to talk to my mom because it just opens up that wound again and the grief just comes back.

So, I'm totally out of the swing of life right now. I can't keep up with my school mess, I'm a pitiful mess about the dog, and I'm sick all the time. My husband is losing patience with me needing to lie around all weekend... But I prefer his being annoyed at me over puking in a public place!

I will get back to blogging soon, I promise. But for now, I'm trying to reorganize and move on with everything I have dropped.

Quick update

We have a lot of "stuff" going on, and it's really eaten up a lot of my spare time to write. I am coming back to write a real post though!

Jaymes is doing well at home, apparently not so much at school. Lots of behavior issues. They finally gave in and put him in the classroom I wanted him in- with a wonderful, very competent teacher who I have a lot of confidence in.

I found out one of my close family members has cancer, so that's very sad and stressful as well, and school is continuing to kick my butt. I am eagerly awaiting my break over the summer.

Anyway, bear with me, I will return to regular posting ASAP.

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

Put that OCD to work!

The topic of this next post is one that is currently serving me very, very well. You always hear (when asking advice about meetings or anything else school related) that documentation is vital. If you’re anything like me, ‘documenting’ means you try to keep track of at least half the pages of the most recent IEP, though you may not necessarily have any clue what order those pages actually go in. It might mean that you keep a mental record of the last few phone conversations you had with your child’s teacher. Sometimes at my house, it means that I can kinda-sorta remember what was said at the last IEP meeting. All the paperwork, and all the information can be really overwhelming. As a result, for a long time I would come home from meetings and chuck the folder of papers into the nearest drawer, then not look at them again until the day before the next meeting.

As things have gotten crazier and more difficult with Jaymes’ school, I finally got my butt in gear and got into the spirit of documentation. Until I got started, I never knew how addictive it is! Documentation has got to be the perfect job for someone with OCD… Or someone like me, who gets really into something once I finally get around to it. I might be a closet OCD sufferer. If so, I’m good with that, because I am reaping the reward of being insanely anal about documenting EVERYTHING.

I bought a blue binder with some folders and colored dividers. It was a total of maybe $10 at Walmart. While purchasing these materials, I also got the excitement of seeing a very large African-American gentleman dressed in a lovely red dress and fishnets. I consider the amusement factor worth spending that $10. I was tempted to suggest that he shave before wearing said fishnets, however, because the huge tufts of man-leg-hair sticking out between the holes of the fishnets kind of took away from the overall picture. I opted to keep my mouth shut, though, and paid for my materials.

I divided up my blue binder into sections. Each section got its own divider and folder, along with a nifty orange sticky note to scribble notes onto. The sections my personal book has are as follow, but bear in mind you can add to or take away some of the sections. Whatever worksbest for your organizational purposes. Back to the point… Here are my sections:

-Current issues: This section is the very first folder, where I stick papers of relevance to the most recent problems. Sometimes it is emails, or Jaymes school work samples. Sometimes it’s specific pages of his IEP, with changes written in some funky color that kept me from becoming bored at the time. Sometimes it is just a paper with a list of stuff to talk to the school principal about, along with doodles of purple ponies and horrendous writing that even I have some trouble deciphering. Basically, whatever relates to the current battle, lives in this section. When the problem is solved, those papers are re-categorized and the folder emptied in anticipation of the next crisis. And there always is one.

-Current IEP: This one is self explanatory. I actually changed the way I do it, now I keep the three most recent IEP’s, with most recent on top for easy access.

-Communication with the school: In this folder (which is frequently stuffed to the point of near explosion) I keep copies of every note I send to school. Also, copies of every email to and from the school. Everything organized chronologically, newest on top. When I first got into this documentation obsession, I had to go through my email account (I actually have an email account created solely for email communication with Jaymes school) and print off the last bunch of emails. Now in an effort to avoid that long and painful process, I print every email immediately after sending it. When I get replies, I print those and add them in. The biggest thing with this section of the book is to keep different issues together- that takes precedence over the chronological organization. I use paper clips to keep together a series of pages printed from a long email exchange. Those emails are organized again, newest on top, then paper clipped together and put into the mega-pile to be further organized.

-Behavior charts: This one is specific to Jaymes, and may or may not be a section anyone else on Earth would have a need for in their personal notebook. Jaymes comes home daily with a behavior sheet that actually breaks up his day into 30 minute to an hour chunks. Each teacher or assistant working with Jaymes for that time block scores his behavior according to a bunch of different categories, then adds their own note and finally initials it. I’ll go more into that in another blog post, because this chart the teachers came up with is pretty darn cool. The bigger issues Jaymes was having at school before his schedule change came out pretty much exclusively in behavior charts, which were at the time “sticker” reward type charts. When the time came for the IEP meeting I requested to solve the issue, I showed up with a small handful of the bad ones (because those were all I had thought to copy) and his teacher showed up with a handful of the good ones. We kind of canceled each other out! It made me seriously regret not copying every single sheet. My point would have been a whole lot easier to make, if I had. So now, EVERY behavior sheet gets copied and filed in the Behavior Charts section of the notebook- yes, chronologically. Have I mentioned yet that my purchase a few months ago of a printer that also makes copies and is a scanner was an awesome investment? I go through a log of ink, but it’s well worth it.

-Audio tapes: This section is actually a couple of those pencil bags that clip into the three ring binder. Each pencil bag holds 2-3 cassette tapes. Yes, I still use cassettes. I don’t like the MP3 type recorders, the good old fashioned ones at Walmart that only cost $24 are a lot easier to use. Before last year, I’d never taped anything. The thought of doing so freaked me out. But after an IEP meeting last year where things were promised (but never written into the actual IEP) and never delivered… I taped one meeting. That was it until a couple months ago, when this huge fuss over Jaymes teacher came up. I realized that a big part of why I was not accomplishing much was because I couldn’t remember what had been said. I get so anxious and so flustered that I immediately forget everything. So I started recording EVERY meeting. The first couple with the principal, then the actual IEP meeting. Just a warning- few teachers and school principals will do the happy dance and smile big when you walk into a meeting holding a tape recorder. It can make things decidedly tense. While they can’t tell you that recording is not allowed, they can (and will) send someone to locate a tape recorder and tape to record for themselves. This is a good thing. Everyone has their own re-playable version of each meeting. When I get home from a meeting or conference, I sit on the couch and listen to the tape. This is the time when my mind is calm enough to take notes and really hear what everyone is saying. Sometimes what I hear tells me that I’ve been a little too bitchy. Or, that I backed down way too easily. I almost always hear things that I had not heard the first time. The other thing good about the tapes is that they make it so people who wanted to be at the meeting, but could not make it, can at least hear what went on. My husband appreciates this, and you can also send copies of the tape to advocates, lawyers, or whoever you need to send to. Big thing with these: Make sure you know how to use the darn recorder BEFORE the meeting. And don’t test it by recording yourself saying something stupid, or singing badly… Chances are you will accidentally play it for the whole room when you try to set the recording up at your meeting. Ask me how I know… Actually, don’t. I’m trying to forget that one!

-The last section in my book is for progress reports. I organize them first by year (four in the school year, I believe), then newest on top. This one is pretty self explanatory, and pretty standard, from what others have told me.

Though I have not started on a couple new sections of my book, you can come up with a multitude of others- based on your personal level of OCD. Everything from lunch menus to medical forms, permission slips to attendance award certificates. Personalize it in whatever way makes most sense to you. If it doesn’t make sense to you, you will not be able to keep track of keeping everything organized and up to date because it just gets too frustrating. I recommend being better than me, also. I have an annoying habit of making copies then cramming them underneath a random section to file in later. When later finally comes, I spend forever trying to make sense of the rubble and I curse my lazy, procrastinating personality.

Once you’ve gotten organized, documented, and are sitting in your living room the day before a meeting… I can guarantee you will look into your notebook, breathe a sigh of relief, and pat yourself on the back for your diligence.

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.