Tuesday, October 23, 2007

Warning: Not funny, interesting, OR entertaining

There's a question at the bottom of this for anyone who's been there done this. Feel free to skip down to it.

I spent the day today looking for an advocate, and now have a list of about four or five people to call. Of course, since nothing is ever easy--since there is never a single "yes this is the right thing to do" path--I got an email from the woman who's been my on-the-ground support regarding all of this saying that I was panicking and that it would do me no good to get an advocate involved yet, but instead, what I need to do is BECOME N's advocate--or, rather, continue getting better and better at beind his advocate. (What she said was, "Right now you are probably afraid of making wrong choices but retaining an advocate when you as a parent are still unprepared or ill informed is not much smarter. You will then be at the advocate's mercy in addition to the IEP team. I strongly feel an advocate is the part of the arsenal you reserve for further along in the process.") I hate when people make sense on both sides of an argument. Can't just one single thing be black and white?

The 'good' news: The assessment plan did not come home with N today, so I've got a slight respite from worrying about how to respond to it.

Instead, I'll respond to a few of your comments. (And thank you for them, and for the ones sent privately to my email address.)

Po: The info about the stand-alone OT stuff is something I am now trying to look in to. I have been using the "if I can get them to qualify him in just one area, then all is not lost, because I can then just marshall forces and work on adding to his IEP." But if OT is his most likely area of need (or at least the needs they're willing to admit to) and it won't stand alone...Then that plan's not going to work.

Green: To quote the school secretary when I asked a question very much like that: "I am not a babysitter. You need to hire a babysitter if you both want to be in on this meeting. That's not our job. School is out." And believe it or not, this is a woman who LIKES me. You should hear her talk to the people she actively DISlikes. Also, I agree that he could probably use a kiddie shrink. It's just more money and more resources I don't have. More moving parts. Too many parts are moving. But it is very much on the list...for after the IEP is done and after the hernia and testicle surgeries are done and after I'm back from my extended stay in a mental institution. Finally, that idea for signing 'under duress'? Is very much along the lines of what I'm hoping to get someone to help me draft appropriately; a response that says something like, "This is a good start, but I believe it does not completely address the issues that are making it difficult or N to get a fair and appropriate eduction." Except in more legalese.

Tamar: Yes. Always.

Ambre: I love it when you curse like a sailor (for you, at least). Two asses in just one comment!

And now for THE QUESTION I MENTIONED AT THE TOP: I'm going to call a couple of area advocates in the next couple of days. But they cost, I'm fairly certain, and my financial resources are somewhat tapped out. (Somewhat = completely and then some. I'm just trying to sound less desolate. How's that workin' for me?) I've already decided I'd rather shoot my wad getting him a professional SLP evaluation than, say, an IQ test or a full developmental exam (especially considering that my last eval from a developmental pediatrician ended with a recommendation to take him to a speech therapist--THIS speech therapist). IF it comes down to having to decide between a good, thorough speech evaluation that I can take into the meeting and shove in their faces (and finally--for myself--getting some kind of ANSWER about what is and isn't going on with my son, which is EXTREMELY attractive to me) and a professional special ed advocate who I can take into the meeting and shove in their faces in a very physical sense...Which should I choose? There's always the chance that I can afford both, but that chance is slimslimslim. And I'm just wondering...How would YOU prioritize, assuming they do turn out to be mutually exclusive in my world?


kristen said...

Okay, I guess when you put it that way...

Though I was one of the ones who urged you to get an advocate, I completely understand the advice to not rush into it. But, if you forgo the advocate now, you have to figure out how to get him what he needs on your own. Which means network, network, network. And perhaps, a few "casual" questions to an advocate who feels kind of chatty on the phone might just be all you need at this point.

I don't want to hijack your entire comments section, so I'll skip to the part about "what would you do?" I think I would research my rights as to what kind of eval. he is entitled to. If a psychological exam is part of it, I'd gently push for that as well. But, if not, I'd proceed as planned with the SLP and see what comes out of it.

The good news is that an IEP is never written in stone. You can request a meeting at any time to revise, change, etc. If it's not working, you have opportunities to fix it. So the signing under duress thing is almost a mute point. The thing is, you have to start somewhere. And that's what this is--a start. It's not the final chapter.

Good luck. And check out this link:

Valle said...

Ok i'll weigh in here, rather than thru email :-). My advice to get an advocate was because of the obvious buffeting you are already getting.

I've been in your place (w/both kids) and I got an advocate right out of the gate with one, and never got an advocate with the other.

The one I got an advocate for was the one where I wasn't quite sure what the disability was, and if you don't understand the disability, you can NOT be the best advocate for him.

I got an advocate who was really obnoxious and she was demanding and loud, but dammit, she got my kid exactly what he needed, she got the district to suck up to me in hopes that i'd never bring her back, and my kid was off an iep in 3 years (i don't give her all the credit, but she got us on the right road and she let the district know that we meant business).

You need someone to get you through this (witness all the questions you've had as you go along -- it never stops, believe me)... I guess I'd ask what harm an advocate would do?

If you feel you can get all the info you need, and that you have the outside support you need (for free), then don't go with an advocate.

I can just say that ours (annoying as she was) was the best money we ever spent.

Rich | Championable said...

I am so not qualified to comment on these things... but I hope you get to apply just the right amount of whoopass so that things work out for you.

PnP said...

Since today is Wednesday and I know how unlikely you are to pick up a real live "phone" before the weekend....kiss, kiss...I will dig up the phone number of a fantastic woman I knew a few years ago...(hows that for a run on sentence). Her son was in need of serious services from the schools and fought like a banchee/banshee (that doesnt look right), anyway, she ended up with a fabulous advocate, totally free to her (the school system pays), and I did end up getting the number at one time. I can't remember if it was for you, but regardless, I will get it again. She spoke very highly of him and even though it's been years since she has been at the school, *I* will pick up the phone for you and get the number...because I love you!

:-) D

Ambre said...

Don't get the advocate. The advocate is not going to get you anything you can't get yourself- the advocate is for people who don't want to figure all this stuff out for themselves anyway.

I am not such a great advocate, because I just might shove Mr. School Psychologist's little pencil down his pencil neck if he keeps up his "I have already diagnosed your child" routine. But you know I can help you navigate the assessment maze. Tamar can get you through the legal crap. You are certainly strong, well spoken, and assertive enough to handle this- and even if you spent money on the advocate, you'd insist on learning it all yourself anyway.

SLP for now, ask the SLP if s/he notices any cognitive issues. I don't suspect an IQ test will be very enlightening to you. I think OT might help- I didn't read paula's thing about standalone OT, but it could happen if his handwriting/small motor is an issue (although not for sensory integration stuff for the most part).

I wish I could remember the name of the program the SLP I worked with in the middle school was using... maybe someone else knows some good ones.

I told you this before, standalone services are difficult without a diagnosis. Why? Because they have protocols they follow if a child has this or that diagnosis, but when it's just "he needs help in a certain area" they can waffle until the kid grows up or moves away.

Ambre said...

Oh, a question. Do you have any concerns about his cognitive functioning or academic ability? Any at all?

po said...

You probably know I vote for the SLP. All I know is that we got screwed seven ways to Sunday UNTIL we had a piece of paper with a diagnosis on it. Then the magic door opened up and we got services, including the one to one aide that made all the difference.

I also want to backtrack a little on my "OT isn't a stand alone service," though I think you definitely need to look into it. That first IEP when we got denied services was when Matthew was 4, so it was for preschool intervention. The rules for school age may be different, and OT may indeed be allowed as a stand alone. I'm sorry if that turns out to be the case and I unnecessarily gave you another reason to panic :(. But I also think that just giving him OT would be total bullshit, since how much is practicing cutting a circle, or even doing sensory activities, going to help him be understood by others or teach him social skills?

I would hate for you to get caught in the "oh, the OT has time in her rotation, so let's give him OT, but the ST is fully booked, so he can't have ST." It happens ALL the time, whether they say it or not.

More hugs!

Ropheka said...

Nice Blog :)

Meg said...

I am with the no advocate group, at least for now. A diagnosis is more critical so if necessary that is where you dollars should go.

I have to say, however, it may turn out to be very difficult to find "the answer" and even more difficult to find a solution. If he is not behind academically or being very disruptive in class, it is much harder to get the school to provide services. Even if they do provide services, those services may not be what he needs to succeed. You may have to fit him into a diagnostic label you don't think fits, in order to at least get him some assistance.

States have very specific criteria. Here, a child that is a little behind may get "extra help", but would not be classified and have an IEP. For that, the child essentially must be failing. As a parent, it doesn't make sense, but to the administration trying to work with a very tight budget it does. Federal money is supposed to fund special ed, but it never does.

I hope the district does the eval correctly, but I am glad you are going to a private person. Unfortunately for your budge, that may end up being where you find the diagnosis and the soluion.

Green said...

I want to apologize in advance. May I suggest though, thinking about this not as "which kind of help should I get my son" but rather "I am investing in my son's rest of his life, and self-esteem, which will affect him until the day he dies"?

I understand not having money, really I do. I have close to no money myself. However, I am the product of a system that did not get me the help I needed, and the product of parents and a shrink that did things that negatively affected me and still negatively affect me to this day (and I'm 31). If I had a kid, I would beg, borrow and steal to get them what they needed to have a productive life. When people say "What does he want for Chanukah?" I'd say "Speech therapy, it's $95 per session" and yeah, I'd be a bitch of a mother and return any toys to get money for them. He might remember it and be angry when he's 16 and 26 and 36, but at least he'd be able to articulate his anger at me for it.

I have never heard of someone having an advocate for this stuff, and can't imagine why you wouldn't advocate for your kid directly.

Okay, I can imagine, but I guess think it's best to advocate for your kid directly rather than hire someone else to do it. I would be happy to give you a pump-you-up speech right before the next time you have to meet with the school.

P.S. Can Em watch N next time so your husband can be there? Offer to pay each of them to babysit themselves?