~"Trouble...trouble trouble trouble trouble...Trouble been dogging my soul since the day I was born."~ Ray Lamontagne
It was a dark and stormy night...well actually it was a lovely afternoon...the sun was shining, there wasn't a cloud in the sky..it was a perfect fall day. I was on my way to an I.E.P. meeting..Zoe, my youngest, needed to have services set up for her in the pre-school. She was officially diagnosed with PDD(nos), selective mutism, and tics, roughly about four months ago. For the past year, she has been receiving occupational therapy for weak motor skills. To put it in a nutshell-my girl has needs. I figured that this would be a quick meeting-set up her services, sign a couple of papers, make some small talk and I'd be home in plenty of time to down a gallon or so of coffee before the herd was home for the day. I am not a novice at IEP meetings. After participating in them for ten years, I see myself as sort of a professional. I am to the IEP meeting what the "Lord of the dance" is to...well dancing-only my shoes are way more stylish.
So I sauntered into the meeting, took my seat..made a little chit chat..I was calm..happy even. I believed that my girl was going to get what she needed and life would go on. BIG MISTAKE. Our case worker started by asking how Zoe was doing at school. Her teacher replied that she followed the routine..didn't talk much, but seemed to be settling in. I responded that Zoe loved going to school-and that talking was one of the issues we needed to work on. From this brief exchange, the caseworker decided that perhaps Zoe didn't need intervention..that because she was able to speak, her right to a public education was not being impeded..and that she wouldn't qualify for services. I interjected with "She has a diagnosis of select mutism AND autism!" and was roundly told "Diagnosis doesn't mean anything-and that if she didn't have a diagnosis, she could be seen as just "shy" and shyness didn't qualify for services...that perhaps she had "mental health issues" that could be dealt with in therapy-something the state didn't
Oh good lord! The permanent record ploy? Really? For those of you that don't know-the idea of a "permanent record" is a tactic used by many educational uummm... institutions across the country. From about fifth grade on-everything and anything you may or may not do in the school environment is said to be put on your permanent record. Test scores.."borrowing" the school van and filling it with crumpled newspapers..after school activities..all of them will be jotted down in ink ..and supposedly this record will
I admit...I was a little blown away by this. A little gob-smacked. I got a annoyed...frustrated...a tad bit angry. I strongly suggested she read the DSM..(hell, I even quoted it!) that in doing so she might realize that autism was a neurological disorder. I asked her how mental health therapy could possibly benefit my daughter." She's FOUR YEARS OLD! What in the world would she possibly talk about-My little pony??!!" She then suggested that perhaps I would consider cancelling services for a while to "see how things go.."( As a side note to anyone here new to diagnosis-CANCEL NOTHING! You will have to fight a zillion times harder to get services reinstated)...She then of course assured me that getting services back would be "simple". HA!...sigh.. I am only slightly ashamed to admit that at that point I asked her if she had been "smoking crack".... We were at an impasse. Neither one of us was going to budge. So we agreed to have an educational consultant come in to observe Zoe in the classroom. That we would meet again in thirty days to discuss the results of those findings. In the meantime Zoe would continue to receive services.
Of course as soon as I got home, I began calling every advocacy group that I could think of and was considering consulting an education attorney. If I had to fight, I would. No one messes with my kids and gets away with it! I am an experienced mother!..and I wear great shoes! sigh... Wouldn't you know it... It seems that all of my phone calls turned out to be unnecessary. After spending two days in Zoe's classroom...Guess what? The consultant believes that my girl has issues after all! When our our caseworker called to tell me that perhaps Zoe did indeed qualify-I exclaimed very loudly (in my head) "You mean that I wasn't making it all up! Wasn't in some sort of plot to bilk the state out of money in an effort to get unnecessary services for my daughter! Because really, autism is the "thing" to have these days." The caseworker then
What I failed to consider before our meeting was our recent state budget cuts. The intention of our caseworker was to cut us off from services-thus saving her agency money. In essence, letting her agency off the hook-and in effect, dropping it into the lap of the school system next year. (kids aren't covered by this state agency when they start kindergarten) I also believe that she thought she would be able to walk all over me. Big mistake. I mean, if she had only read my "permanent record" she would have known better.
Ah, I get angry all over again for you reading this! I'm glad you stood your ground and that it worked out. We both know it won't be the last time you'll have to fight to get the services needed, but you'll win them, too!
makes me soooooo mad
Glad you stuck to your guns
I am in IEP heck too
unbef###inglievable (that's a real word)...
...we had similar issues a few years ago and luckily our local TD (politician) really came through for us.
Funny, I've never seen the word "shy" in the DSM. I must have missed that part.
It's amazing how we still have to fight so hard to get services our kids need. I have been working for a year and a half to get a communication device for my nonverbal son. I rarely hear from his case worker that is handling this. So frustrating. Hi from the Special Needs Blog Hop.
I love the "Permanent Record" gambit they throw at you. Like my son was just going to slip right into the CEO job at Microsoft but, that damn notation from his IEP in 5th grade .... Glad you stood your ground. I love a good "sticking it to the man" story in the morning.
So glad it worked out for you :) But isn't it scary that other families who are not so knowledgeable or more easily cowed would just lose the services that their children so badly need. Wish they could all read this post x
Sounds just like what I went through trying to get Coleman services, only I did have to hire an attorney.
Pisses me off every single time I hear another story like this. And the previous poster is right. There are SO many families that don't know they can stand up to it. Ugh. It really is maddening.
And the permanent record thing is just stupid. Do I want the diagnosis on their permanent record? UM...YES! Because it's what they have and who they are and that diagnosis, permanently documented somewhere is what gets them the help they need to get through this life and make something of themselves.
Whoa...I'd better stop now, before I go into a rant.
Yeah, they clearly didn't know who they were dealing with. Loved that you asked her if she was smoking crack! This was a great read, because I'd never heard of that "permanent record" thing or that if you cancel services you have no chance of getting them back. This is why I read all of my peeps blogs....rock on warrior mama!
Kim-thanks..yeah..I'm still pretty angry..
K-floortime, having to fight all of the time is just so frustrating isn't it? Good luck with your IEP troubles..
Jean-I use that word ALL of the time!
I think there is a special DSM for caseworker use only..I think the title is "How to save money and piss off parents while holding all the power" or something like that..:)
Tammy-that is just unacceptable! I am so sorry you have been fighting for so long..you could try what I do-I call..and call and call..everyday..sometimes more than six times. I put myself in the mindset that "I am right!" sometimes it works...
Big Daddy-I aim to please..:) I know! I really couldn't believe that she said "permanent record"..it was one of those moments when you question your own sanity..a WTF??? moment. I've never heard it used in that way before...Told me an awful lot about how this "caseworker" viewed disability..
Blue sky-yeah..I do worry about the people new to all of this. It can be so scary..and you want to trust someone to tell you what needs to be done. Makes me wonder how many kids are just "getting by" because they aren't getting services-because their parents were convinced not to fight for them. sigh..just getting by is not acceptable..
Lifewithasperger-rant away! Exactly, my autistic daughter is going to grow up to be an autistic adult..nothing to be ashamed of..and yet the caseworker implied this with her words..After doing so many IEP's..I thought this one would be easy..sigh..seems we can never let our guard down. There needs to be more attention brought to issues like this...
Lynn-yes-I have known people who have been coerced into not getting services..and who had a very tough time getting them back. It was like they had to start all over from the beginning...You know when I enquired as to her drug use-she didn't answer..hmmmmmm...
I think your 'smoking crack' question was totally justified, I mean, WTF??!! Things are going the same way here though, if a child is quiet and not causing trouble then they are not seen to have extra needs so they can fall way behind and not get the extra help because they aren't breaking tables and causing mayhem. Shocking stuff! Jen
Hi! I'm visiting via the blog hop, but now I'm your newest follower! Great post! I'm glad you stuck by your guns. What they tried to do was absolutely shocking.
Someone should keep a permanent record of the things institutions do. Problem is, the things they do are often so outrageous, no one would ever believe it, anyway.
I'm visiting via the blog hop..and am going to follow you too! I have a four year old with Autism.
I can not believe what a horrible experince you had to go through! that is totally uncalled for and I would do some major complaining. I am glad you stood up and said something. Just wow...
what is the world coming to?
Good for you! It's offensive that they even try this stuff; but, what's worse, is that for so many parents (usually new to the system) it works.
I have two friends whose children need and qualify for services, and because they're both getting started it's been a struggle. Nobody told them (before me) that they had a right to an independent (i.e., unbiased) evaluation or that their children had rights to receive the services they qualify for independent of the school's budget.
I understand budget issues, I really do. But we're talking about our kids. Now is not a time to back down. Some things are just more important than money; and if those services disappear there's no guarantee they're going to return when the money does. The priorities you set when the chips are down are what your priorities really are.
Kathleen, that is shocking. You have read the situation correctly: she was trying to save the state some money.
And that's the danger with the crappy PDDnos diagnosis (WiiBoy's official current diagnosis) The message we need to get across is that PDDNOS IS REAL AUTISM!!
So glad it was sorted... I was so ready to say "Fizzy orange and smarties for brekkie and late nights for a week" for the consultant to view your gorgeous Zoe!
And.. a word to all your newbies too : KEEP A DAILY SCHOOL/HOME JOURNAL recording all events. Comes in real handy when they roll out the "shy" comment cos then you can calmly flick through the journal pointing out all the incidents ;-)
Well done you strong Mama with the stylish shoes!
What is this 'permanent record'? Is there really a document that prospective employers consult that goes back to kindergarden? If so ... that's creepy.
Hi jen-I know, it is pretty awful to have to "prove" that your child has disabilities. This woman was trying to make it appear as though I were making it up. As if "autism" were a fashion choice or something..frustrating!
Hi Cheryl-welcome-and thanks. *sigh* it is isn't it?
Hi Papa bear-oh I know..the "Judge Rotenberg Center" comes to mind..:(
Hi dotcomkari-welcome-I can have a big mouth when I need to..it is shocking and silly and a waste of valuable time. She has a diagnosis from a neurologist! And yet, the caseworker felt she knew better!
Hi Stephanie..yes, sadly it does work. even the booklets that they give out, explaining your rights as a parent are in teeny print in a hard to decipher language. I'm glad you were able to help your friends..yes! trying to get services back-you are right...there is no guarantee-which is why you shopuld think very hard before discontinuing them..
Hi Jazzy-I know! Sammy has the same diagnosis. For some reason it wasn't at all difficult to get him services-but that was 10 years ago..and in a different state. Great idea on the breakfast! heehee...Fabulous point on the home journal-DOCUMENT EVERYTHING! Wearing stylish shoes doesn't always count..:)
Hi bbsmum-yes and no. What a permanenet record really is-is a listing of your grades and extracurricular activities. It is part of your transcript when applying for university. However, it is kind of used as a bogeyman. Its impact is made more of than it really is. It can be held over ones head as a threat-when in reality it is really nothing more than a transcript..for some reason it has been turned into an "urban legend" sort of thing...:)
Hi. I'm visiting early this week from the special needs blog hop. OMG that is just appalling - to try to use fear of a label to get a parent to pass on services for a four year old with Autism!!! Given you have older ones on the spectrum a line from an old Faye Dunnoway movie came to mind..."don't *bleep* with me fellas, this ain't my first time at the rodeo"
What in the world is wrong with the school system? I don't care if you have budget cuts, that doesn't mean kids don't deserve an education that adapts to their needs. I would have asked her if she was smoking crack too.
You know what strikes me as I read this? All the poor kiddos who don't have parents who aren't paying attention or are new to this, and their kids get the SHAFT. Our kids are very, very lucky.....
You get a booklet? I get a photocopied handout. It's not in small print, but it's still written in legalize. So I can attest that the larger print doesn't really make it more readable.
That's exactly it. That's why one of the first things I do when I find out another parent's child is getting into the special education system is to offer them my assistance and advice--not try to give them unsolicited advice, but offer myself should they wish to utilize me as a resource.
I didn't have that going in--and I am just lucky my kids went to a great school with people that really cared about them. But I've attended lots of IEPs now, even some where there was a need to fight for services (win some, lose some), and I've also received training through a program called Parents as Leaders.
Sometimes just hearing me tell them that their child's rights are being violated is enough to give parents the courage they need to challenge a decision.
And that's something most of us can do.
Ugh! How frustrating. My son is in PPCD and he loves it. It is so good for these sweet kids! I am sorry you had such a bad meeting. Hugs! Thanks for stopping by my blog too!
Hi Momrising..I know it IS appalling! you quoted one of my all time favorite "bad movies"!!! "Mommie Dearest" :)
Hi Angela-this is something that I hope to be a part of changing..
Hi redheaded Mama-yes! there is a lack of info and support for those new to diagnosis..sigh..
Hi Stephanie-:) Our booklet is photocopied!! hahahaha...
Hi Shannon-it is frustrating-thanks!
lol The best of both worlds! :-)
Thank heavens for homeschooling.
Keep fighting the fight, your kids are lucky to have you...
Diagnosis doesn't matter? It seems like IEP's suck whether you have a diagnosis or not, and I guess this is why. My IEP's were pretty bad. My teachers insisted I just wasn't applying myself and I was purposely fighting with other kids (really I was struggling to stay organized or stay on task and I was being horrifically bullied). They want whatever funding they get for having children with disabilities in their programs but they never want to take the responsibility to help those children.
psssst, its me. Technically I am visiting from ICLW because I saw you listed but it doesn't really count as we are already friends (or does it??) :D Jen
Popped in for a cuppa and to leave a comment via ICLW. Caffeine is a food group, yes?
Wow, I love happy endings, but sometimes, they really make you work for them, don't they? Must see beautiful shoes sometimes (I'm footwear-fashion-im*pair*ed--pun always intended--personally, so I love it when moms rock the shoesssss). Good for you for sticking to your guns (and not hurting anyone) to get your daughter the services she needs! Yay, Mom!
Well done for holding your tongue.
Why do they think we make these things up?!
I was a special ed teacher and then an attorney for special needs kids- and your post here pisses me off so badly. . . I HATE when schools try to prey on parent's fear or lack of knowledge to try to bully them into things that are wrong. ARGH. I'm so sorry. You know, in places such as Atlanta you can find ways to get certified as an education advocate- it might be worthwhile for you to etiher a) explore this for yourself or b) find a volunteer who can attend meetings with you.
Remember- it is ILLEGAL for them to use financial consideration as a reason to give/deny services.
Your kids are lucky to have you hon- I'm sorry for the battles with the schools- the one place children should not have to fight for what they deserve.
We have our annual IEP tomorrow. I'm fully expecting them to try to save the state money....we'll see how that goes.
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