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I, EEEEEEP.

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After the meeting, we all came home, had some lunch, played in the backyard, watched the refrigerator repairman shake his head discouragingly, paid for that head shaking with the for-emergencies-only credit card, and put the boys down for naps. Jason left to spend a couple hours at his office. I called my mom.

I was okay until I got to the part about the bus.

Kids who attend our school district's preschool program can ride the bus. A special bus, just for them, that comes right to your house, with car seats and an aide, and... It's... You know, short.

I stumbled over the word, laughed a little, and started crying.

***

Our district actually has quite few preschool programs -- varying attendance, class sizes and levels of need. Early Intervention assured us that Noah would never qualify for any of them. When I called our former case manager this past winter in a full-scale HOLY FUCKING SHIT THEY'RE GOING TO EXPEL HIM FROM PRESCHOOL WHAT IS WRONG WITH EVERYBODY freak-out, she quickly managed to talk me back off the ledge and reiterated her belief that Noah would not qualify. At the most, he'd "maybe" get itinerant services, which is basically just some poor overworked special education teacher poking her head into your child's classroom a couple times a year to make sure he's not scaling the walls and setting the hamsters on fire.

Beyond that, there are three levels of actual preschool programs that a kid like Noah might attend. For simplicity's sake, we'll call them:

Two-Days-A-Week 'Tis A Flesh Wound

Five-Days-A-Week The Full Monty

Five-Days-A-Week Okay, We're Fucking Serious Here, Your Kid Is Kind Of A Mess

I figured we were talking 'Tis A Flesh Wound. In fact, I was counting on it, and had already preemptively complained to more than one person about how two days a week was going to be such a PAIN, because it meant we'd still need to find something for the rest of the week because of my JOB and STUFF and WHATEVER. I'm...just such an ass sometimes.

The choices laid out for us yesterday included The Full Monty and...the other one, the last one. I think my initial response was something that could only be phonetically described as a squeak.

After some back and forth, the general consensus was that Noah is better suited for The Full Monty plus some weekly one-on-one therapy, although the occupational therapist did not seem entirely convinced. It's two and a half hours every day, in the afternoon, as if designed for parents who would like to keep up appearances by enrolling their child in a typical morning program.

Oh yes, Junior attends Hoity Toity Pants Quadralingual School. It's lovely.  What's that? A playdate this afternoon?

<eyes dart around in a panic>

Um. We're BUSY, SORRY. GOTTA GO.

Technically, Noah could still attend Montessori in the morning. Huh. I have not decided whether to ask for my deposit back yet, though I sure could use it to fix my goddamn refrigerator.

***
The rush of fast and furious and conflicting emotions at these things, well. GOD, is all I can say. I was relieved to hear that they agreed with me, that they Saw It Too, that Jason and I were right after all. But oh, what a bittersweet victory it is, especially when "it" means someone looking you in the eye and saying the words "educational disability' out loud. Then you're all, "Fuck you."

But not really. I liked our IEP team members, I felt their concern was genuine, their determination not to let Noah fall through the cracks (AGAIN) was admirable and The System was working like it's supposed to and all that. They took our concerns and descriptions of Noah's behavior seriously, they understood that a meltdown at a playground is different for us, that it's not the kind of meltdown *your kid* has, no  it's just NOT, that it's like someone set our child on FIRE, that there's no redirecting or soothing, there is only FLEEING. They understood and sympathized that life with such a rigid-thinking, inflexible, easily-overwhelmed preschooler is tiring, draining and that we negotiate with him from morning til night over everything from socks to food to which direction the car is driving.

It felt good to say all that stuff out loud, finally. To let my shoulders slump and admit defeat, that I just don't know how to help him anymore, and that I'm sick of his issues slowly taking over more and more and more of our daily lives.

And then I saw Noah playing quietly on the other side of the room, lining up some dinosaurs, still the perfect chubby-cheeked baby they handed me in the hospital, still one of the best things that's ever happened to me, still one of my favorite people in the entire world. I snapped my shoulders back to attention and asked that they add more social skill measurements to the IEP goals.

***

I am so beyond angry with Early Intervention right now I could almost hit "send" on any of the very screechy indignant emails I've composed. We shouldn't have graduated. Noah should have transitioned to the district a year ago. We shouldn't have had to endure this crappy, confusing mess of a school year on our own; it shouldn't have taken this long to get back into the system. Advice to anyone currently in the under-three EI world out there: Do. Not. Let. Them. Graduate. You. Do not let them make you feel guilty for taking up a space in a class or a therapist's appointment slot. Do not agree to end services without an official transition process at three years old. Do not let them tell you what the results of that process will "probably" or even "likely" be. Get the results yourself. Show them EXACTLY who your toddler gets his stubborn streak from.

***

After it was all over, the occupational therapist pushed a piece of paper towards me and handed me a pen. Signing would make it official. I picked up the pen and my hand shook. The words blurred and I suddenly felt overwhelmingly nauseated.

Jason commented that he was pretty sure Ezra pooped. I immediately volunteered for diaper duty and shoved the forms at Jason before bolting from the room. I couldn't do it. I didn't necessarily need more time to think about it -- I knew this was the right decision for us, I was happy with the recommendations and the goals. I think we got pretty much the best possible outcome. Nothing will even happen until next fall, anyway, as we all agreed it's best to allow Noah to finish out the final weeks of the school year as planned. There will likely be more decisions and appointments and hurdles and questions this summer. An IEP means there is accountability, legal protection, help. Noah needs this, he does, and there is no shame in that need and he will be even more extraordinary one day because we addressed that need.

But I still couldn't bring myself to be the one to sign the paper. I don't know why.

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Comments

nancy mandell

Hugs Amy

I have been reading about your precious, sons for a while now. You have been insightful, thoughtful in learning as much as you can to be informed about
your child. He sounds so delightful, full of fun, eccentric and beating his own drum. You can't ask for more than that. He is uniquely divine! He will become all he can be, because of his dedicated and tenacious parents. Best of luck, you are doing awesome. Another special needs mom of a 22 yr old, son, Ryan. Nance

Lori

I hope this isn't over-stepping any boundaries, but if Noah knew *just* how hard you were fighting for him, I KNOW that he would say, "Thank you Momma!!"

It's an awesome thing that he has someone who loves him so much, who is out there as an advocate for him....you are amazing.....

Katherine

I see a beautiful, special child (special in the sense of extraordinary), with a beautiful special mom who is doing all the right things to get that beautiful child what he needs--even though it is hard and often heartbreaking. You go, girl. Noah will be better off for all this hard work you are doing. I am SO impressed with the both of you!

Jen L.

Amy, thank you so, so much for sharing this with all of us. I just know you're helping so many people by being so honest and frank about your experiences. Noah is so lucky to have you and Jason on his side.

s.a.

Noah is clearly a sweet, very smart, very loved boy.
I work with special needs kids, mainly kidlets on the spectrum, mostly under the age of 6, and I can't tell you how often I marvel at the AMAZING progress our kiddos make, and also how often I bitch that my clients don't have enough services. We can make such a huge difference when they are little, and I often wish we had them more often- more preschool, more 1:1 therapy, more OT, more Speech....more is GOOD. More is EXCELLENT.

I can theoretically understand that this is your baby, and that your feelings are conflicted about getting The Full Monty. But as a therapist who works with kids like Noah, I say eff Early Intervention, those jackasses, and yay for The Fully Monty. :)

JoAnn

Oh Amy, I can understand completely what you say- and you say it so well. Without going into excruciating detail- I am going through something similar with my son and I just cannot put it so perfectly into words like you can. We are still trying to figure out what is going on with my son. I have had him tested- doesn't qualify for any services- yet something is not right. He is not like the other kids- needs lots of help to get his work done. It fucking sucks that it has to be so hard. I love him more than life itself and as his mother I just want to take him away and protect him from all the shit he's going to have to go through. I just wanted you to know that I really truly understand how you feel- because I am feeling it too.

Jessica

You, my dear, are a FABULOUS mother, and Noah is lucky to have you. And, you are lucky to have him. I can't say enough about how much I adore you guys, even though we've never met. In my opinion, you are doing all the right things - I find you to be an absolutely phenomenal mama. Really. Hang in there, sugar. I truly believe that with your dediction, Noah is going to blossom. Plus - he's already so freaking adorable and wonderful, and I love hearing about him and Ezra and Jason...I just love you guys. Thank you so very much for sharing your lives with us. It's a special treat.

Julianna

You are so awesome. If any of the kids I taught had parents that fought this hard for their kids, I'm pretty sure I would have to fight the urge to open-mouth kiss them. I hope the IEP is helpful for his needs--just think of it as a little extra help for someone who is EXTRA deserving of it!

Ginger

XOXOXOXOX also. You guys deserve it, and you rock.

DebbieS

"Show them EXACTLY who your toddler gets his stubborn streak from."

Bravo, brave Amalah. There's no way Noah isn't going to beat this challenge, not with a mom like you at his back.

laura

we've had our own "short bus" moment
http://adventuresinjuggling.wordpress.com/2005/08/16/a-teary-mommy-moment/
it proved to be so much fun for him...all his playmates on our street were so jealous that he got to ride a bus.
seriously, i imagine how this must make you feel. hang in there you are doing what is best for your little guy and he will, i imagine, shine through this adventure. IEPs, special ed and support can be such a headache i know but if it helps to unlock the amazing potential we know our boys have then it is worth it.
i look forward to hearing about your son's adventures riding the bus. i kind of miss my son's adventures.

Laural

we're going through this right now also. But, my son is a little older. And the problem is that he is already in school (jk) and so we are dealing with these issues in front of the other kids.
Hopefully you'll be able to sort out some stuff BEFORE he enters the school system so at least there will be some methods in place before he starts.
But, can I tell you that with my son, now that he has an IEP, we're working on strategies (and he's on meds) life is so much easier.
He'll never be the easy kid who can just sit down and do the work assigned, but after a year of intervention my son is SOOOO much happier.
But I'm with you. It's a tough pill to swallow when you deal with everyone.

Cheryl S.

I'm sitting at my desk, crying. I'm so so sorry that you have to sign everything and make it official and have it go in his "permanent file". Really, I am. I also agree that, from what you've described, he needs this. He will benefit.

I rode the little bus for a year. They called this stuff "learning disabilities" back then. My mom showed them where I got my stubborn streak, too. She wouldn't accept that a 4 y/o that was reading was "retarded". [That's what the fancy dancy preschool told her] My issues were less emotional (although there were some) and more fine and gross motor and stuff like that.

I tell you this because I am a college graduate. I have a job (I'm a paralegal), I have a husband, I have a daughter of my own.

I have no idea what my life would have been like without my mom fighting for me. Without that little bus. I'm betting it would be very different.

God bless you for advocating for your son. As hard as it is, he's worth it.

Kayce

I've been reading for a long time, even though I've never commented before. When you first mentioned Noah's problems way back when, when EI was first mentioned, I thought, "Huh. That sounds kind of like my son." He is exactly one week younger than Noah, so I figured he was a pretty good guideline for what my son should be doing.

I learned from your EI experience and followed many of the basic tips you told us they'd given you. The EI people were quite impressed with me when I gave up and had them evaluate my son.

My EI experience was pretty good, and our teacher was an advocate for us to get him into the special education program as soon as he turned three. He had made significant progress, but we were worried that he still wasn't a typical three-year-old.

Reading about that ARD meeting brought back the memories from the beginning of the school year when my son started pre-school at the public school, when he first stepped on that short bus. It was tough. I fought the decision and wondered if it was really going to help any. He had just started an MDO program at a nearby church, and he loved it. He was already blossoming. Surely he didn't need this too, especially when the time conflicted with the MDO program we had just paid major money for.

I worked out a compromise with the MDO program and held back my tears as he was helped onto that bus two days later. It hurt. I hated that my son was that kid labeled "Special Ed," who rode the short bus to get to school.

Now it's not so bad. He loves school and has truly blossomed. He's a typical three-year-old now, even if his afternoons are always planned for him. And I put him on the bus with a challenge in my eyes, daring anyone to say anything to either of us about it. Nobody has. Everyone can see my son is a special kid, although I think they might just wonder now what makes him special ed. I'll be so much more grateful for that when he starts kindergarten acting and learning just like any other kindergartener in a few years.

I'm sure Noah will be the same way. Before you know it, your special kid will be just as charming as any other three-year-old. You'll come to like his school. And if the bus is that big of a deal, it turns out you can turn down the free transportation and take him yourself. But if I were you, I wouldn't deny him that chance to develop relationships with the other kids on the bus, the bus drivers, and the aides on the bus. Years from now, he will remember riding the bus, not that he was riding a short bus.

diane`

And this post just proves my point! You have done so much for that wonderful boy.

Kudos!

Dayna

Ideally, the Montessori school will have a 2 or 3 day a week program for him so he just isn't in school all the time. That's what overwhelmed me when we were going through a similar decision with our twins, who are now pretty social 1st graders, reading on a 3rd grade level.. woot. Their IEP is only for speech. Sometimes the "change" comes fast. I think you're going to be pleasantly surprised. Good thoughts to you - you've really done such a wonderful job advocating for your boy.

Cindy

Amy,

You and I have very similar children. What helps me during the difficult new discoveries is repeating this: The only difference between today and yesterday is now I know how to better help my child. She isn't carrying this burden alone anymore.

Then I dust myself off, and forge ahead.

By the way, my daughter is in college now, living in a house with friends, and doing very well.

Cindy

erin

I am proud of you. You are a wonderful Mom who didn't give up. Good for you! You are my favorite mommy blogger because you aren't perfect, don't pretend to be perfect and we all love you for it!

Trsta

Feels good to know even when what you know doesn't feel so good, doesn't it? Glad you kept fighting for what Noah deserved.

Hang in there!

Joanne

I am commenting so late but I must because that freaking bus is what got me too, at our meeting. We started late, too, but it was my fault - my son was 'just a boy', was 'very physical', I was 'worried because he was my first', etc., etc., blah blah blah. My son also gets the Full Monty plus therapy and has been for a year and he really is doing well. It's much more 'normal' than I thought it would be. We have to do what we have to do for our kids, when we can do it. Don't get hung up on the past, it doesn't do any good - you guys will be fine, he's so beautiful, he's so smart, you guys are right on. Hang in there sister.

MamaKaren

IEP's are hard. Admitting that there is anything un-perfect about your babies is hard. I wish I had something to comfort you, other than "I sorta know how you feel," but I don't.

For a long time, children didn't get diagnosed with bipolar disorder. As a result, when folks hear me say "We're treating Hoss for bipolar disorder," (a phrase I've only just learn how to say without choking on the words) they are a bit distrustful, a bit nervous, and think I am overreacting to what must be typical 8-year old boy behavior. We know our children better than many of the outsiders do, but that doesn't make it any easier to handle when we get confirmation of our own worst fears.

Lisa

I just wanted to tell you I think you are amazing. Noah is a beautiful son and you are so blessed to have him, and HE is so blessed to have you as his mom, to love him, cherish him, care for him, believe in him and fight for him so very, very hard. You are a great, GREAT mom.

Amy H

You are one of the best parents I know.

Holly

Noah is very blessed to be yours. I've been reading for almost a year now, and my good friend's son is so much like Noah, except with his own different "quirks" and a year younger. He'll be 3 at the end of June. A year ago he had about five words, and most of those unintelligible to most people. He's now been getting OT and ST in the home twice a week for the last 9 months and has shown amazing progress. They've talked with her about transitioning him into the cooperative preschool but she is dragging her feet on it. She seems to think that he isn't going to need it and that he'll catch up, but he is only now starting to string two and three words together, and I'm also seeing a lot of new sensory issues that she calls "stubbornness". I'm not an expert on sensory issues but I am in a field working with kids and have learned enough to at least recognize them. I love that boy, and it breaks my heart to think that he is not going to get what he needs because his mom is not taking any initiative. Is it my place to say something? I keep asking her if she's started the process of tests and stuff, and she keeps acting like she might get around to it but doesn't think its important. How would you have felt if a friend of yours told you a year ago not to put Noah in the regular preschool?

Kim E.

Amy;

I popped over from Kristi's site (Not Quite...). I've never buzzed in before, but boy, God knew I needed to today! I am about 6 years beyond where you are with my beautiful young man. And he's graduating from Grade 8 this week.

We have days where we still are where you are, but...we are also far beyond the horrible younger days. Maturity has replaced the insanity of being little and having no clue what was happening to you...or how to stop it.

I have cried enough tears for my son, and probably still will. But here's the good news. That IEP? I can say (because hindsight is 20/20!) that you did exactly the perfect thing. And you will need that little piece of paper more times then you will ever imagine possible!

God has since found His way to give me 2 more special needs boys, and absolutely joyful twin girls. Every day is an adventure, and I am so glad that I have perspective to save me from selling them all and moving somewhere remote.

Thank you for your candor, and reading your entry today reminded me to continue to be glad and grateful every day that this young man moves towards adulthood. I know that one day you will also have that hindsight and I'm joyful in that knowledge.


Is-arguing-over-Risk-redundant?-Mom to:

Daniel-14
Scott-12
Bryan-10
Sarah-9
Dana-9

Kim E.

Ummm...can you tell I can't do math?! Make that 10 years!

Karianna

Three years ago, you awesomely sent a bunch of readers my way when my son was expelled from Kindergarten. I was both amazed and a little embarrassed by the attention, but definitely glad for the support.

I never wished this sort of conflict on anyone else, and certainly didn't expect the whole e-i-e-i-OH-IEP for Noah, but you've been so vigilant that I know you guys will do awesome. A couple years from now, you'll look back and be stunned at how far you've come.

Marnie

It's just so many emotions for your to deal with and I don't have the first clue what to say.

((((((hugs))))))

Jeanette

Amy-

I know how you feel- a mix of "yeay, someone's going to 'fix' my baby" and "oh shit, the short bus".

My son had awesome friends in kindergarten thru second grade-no one, NOT ONE, ever teased him for leaving class for therapy...in fact, they wanted to go with him!

The results were worth every knot in my stomach.
However, you are dead on about the letting-them-graduate issue.

Elizabeth

Yesterday was our IEP meeting for Nathan, he had his three year re-testing. Turns out he has an above average IQ...and a learning disability. He'll see a resource teacher for at least 30 minutes every day next year.

I know it's hard, but like you said, there is no shame in a kid needing help. I'm sorry E.I. made the process more difficult. You're already helping Noah so much just by being so involved.

keric125

You.Are.A.Great.Mom!

Jan

Chin up. You are a wondermom and a great writer too. Up, up, up!

MommyNamedApril

you're a great mom. you're doing everything in your power to give him a normal (no, fantastic) adolescent and adult life. i totally understand not wanting to sign the paperwork... this does not diminish all the great work you have done on his behalf. good for you, mama.

Aliesha

You are definitely doing the right thing. It was so hard to sign those papers almost 4 years ago when my son was recommended to follow an IEP of 5 days a week at the local school at 3.5 years old. Yes, a "short" bus picked him up but I can honestly say as hard as it was....as hard as it's been....it was the single best decision ever made for him. He is almost 7 years old and while he still has his quirks, he is leaps and bounds better than when we started.

Gigi

Thanks for so eloquently showing us the emotions and fears from a parent's perspective. I'm a teacher and have sat through many an IEP meeting. I always try to remain cognizant of the fact that this is a PERSON we're talking about, a person who is loved and cherished. A person for whom parents have hopes, dreams and aspirations, just as all parents do.

But I've known other teachers who only look at the clinical aspects of an IEP. Thanks for "humanizing" the whole process. These Noah posts ought to be required reading for every teacher out there.

BOSSY

Honey, honey, xoxoxoxo, honey.

Cheri

Amy- I just want to say thank you for all the info you have put into your blog- My son is 18 months , and is still not really talking. We go for the EI evaluation next week, I read the Late Talker and got the Signing Time videos from the library( Nick loves them). He makes a lot of sounds, but the're not words. He also didn't walk well by himself until 16 1/2 months. Big baby, big head. My parents and friends don't think it's a problem, but I don't want to wait and find out later we could have helped him sooner. So thanks - I have a model to learn from in this whole speech delay thing.-------Cheri

lorrie

Forget Montessori. They'll be putting him through some pretty intense paces at this new program and I have no doubt that he will do great.

My best friend ignored the elephant in the room and put her kid in Montessori instead of getting him the early help he needed, and she's now paying through the nose for him to attend a school for LD kids which is great, but the tuition alone is more than my salary was for the first 5 years of my career.

lynda w

My son rode the "short bus" for 3 years for Early Childhood Education. I was heartbroken then, but I can tell you now that he's older and going into 3rd grade next year that it wasn't nearly as awful as I made it out to be. He's doing great now and gets a little extra help when needed in reading and math. Most of the kids that Ryan went to ECE with are all now in the normal classroom setting. Good luck!

Amanda

You sound like a wonderful, loving mother. I so enjoy reading your blog, your updates about Noah and Ezra--the whole shebang. My husband is a special education teacher, and I see (second hand) so many struggles. I so admire your perseverance and strength, figuring and planning and wondering and researching and fighting and pulling back and fighting again--ALL OF IT--all on behalf of your beautiful boy. You're awesome.

Emily K

I know exactly how you feel. You are doing a great job and know that with time, it will hurt just a bit less. You are doing what is best for Noah and he will show you over and over again, what an amazing child he is. You are not alone. This is all too common. You are right - our kids tantrums are not like "others". Our daily life is not like "others". I like to think the beauty of our kids is not like "others" either.

For the record - my son LOVES to ride the bus.

JChevais

I should be logging off and going home but I made the mistake of reading this and I just have to say, as I snort and bawl and shake with tears that I thought that this was BEEEEOOOOOOOUUUUUUUTTTTTIIIIIFFFFFUUUUUULLLLLLL and that your kid is one lucky chap to have you as a mom.

JChevais

And reading this wasn't a mistake, I'll just look teary on the way home. No big deal.

Lavina

I'm so sorry for all the crap you have had to endure through the system when all you are trying to do is what's right for your child to be able to give him the best opportunities available.
I commend your efforts and your ability to stick up for him at every turn and not give up. There are so many others that wouldn't know where to turn or what to do and sadly their children never receive the help they require.
Those boys are so lucky to have you as their mom. Noah will excell and he will owe it all to his persistant mom who loved him enough to care!

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