31 for 21:#9 Tiffany's Top Ten Tips for IEPs: No Brainer

This may seem like a no-brainer...but keep tabs on your child's progress on their IEP goals.

I mean, you go to ALL this trouble to duke it out at the IEP meeting, Don't forget about it and assume that the goals are being addressed and met! 

As my mom said, keep all your materials (notes, testing, IEP) on your child stored and organized.  Take them out and check your child's progress report against them periodically.  The most obvious time is at "report card time". But I also check about halfway, either in conjunction with their teacher, or just a quickie run through at home.  Make sure that they are all being addressed.  Check our their actual progress, assess if the IEP goals need to be expanded, or even if there needs to be goal regression or breakdown.

If your child has a breakthrough quarter and meets all of the goals, then you need to call another IEP meeting to rewrite goals.  Reward the success, with the child AND THEIR TEACHERS AND THERAPISTS, with treats or simple sweet and complimentary words about how proud and thankful you are.  And then push them to greater success and independence.

If your child seems to be struggling and the goals seem to stretch out before you, heavy and demanding.  You have two choices: 1) rewrite the goals with a greater chance of success or 2) break down the goals on your own and reward your child and compliment the teachers/therapists at positive intervals.  Personally, I usually shoot for the second, the whole "shooting for the stars" kind of thing...but I never hesitate to rejoice and share my rejoicing at accomplishments!  Mostly because if you constantly fight, fight, fight for a huge future and forget to get excited about the baby steps, you and your child will become discouraged.

Never forget that while the IEP meeting is important for the direction of the year, and it is then becomes an everyday guidepost.  And that it is your responsibility to call to accounting.

Updates...a Quickie Post

Real quick!! 

Elise's daddy had reconstructive knee surgery and has Elise's super sensitivities to drugs and is struggling with both the recovery and the side effects of the drugs that are supposed to be "helping" him.  And so I am going crazy...

Elise is enjoying her new classes and new teachers...and is putting everybody through their paces...looking for the chinks in their armour...which she will then assess how she can use them...seriously...this is her MO.  She may not have a super IQ, but DANG can she read people...

I finally got a call back from the ABR (sedated hearing test people) and the communication technology specialists.  We have the ABR scheduled for the first of September and the communication assessment for the middle of November.  I am really looking forward to the results of both...AND I wasn't forced to break into their offices and threaten their first born...but just barely under the wire...  :)

I also finally found a speech therapist that she will be able to attend regularly!  YAY!

Also, in my stress of everything, I have fallen back on my own comfort food...Indian food...MMmmmmmm!  And you want to know something?  My kids all like it...!!  Elise is all but licking the bowls...  Peanuts?  No.  Grapes?  Uh...NO!  Curry?  Cumin?  Potent spices?  Delish!! 
teehee!

Also, she wept copiously when I went to swim laps at the pool...she wanted to go something awful...I think I'm going to try and take her to play one time soon...maybe if I get brave, I'll attempt swimming lessons.  SERIOUSLY.  Even typing that makes my chest constrict in stress a little...but maybe...

31 for 21: #3 So Smart

So, this year's progress is another post altogether...but this is a great Elise story!

Amelia, her 5 year old little sister, started kindergarten this year. Elise has been quick to jump in on all of Amelia's homework. Telling numbers, counting, reading, letters, etc, quick before Amelia can figure it out...

Amelia, being the dramatic emoticon that she is, started weeping theatrically one day and shrieked out "Elise is smarter than me!!! She knows everything and I know nothing!! I am not smart and I am worthless!!"

I, being the good mommy that I am, stepped in quickly, and said, "It doesn't have anything at all to do with being smart or not!! Elise has had 4 years of practice!!! You will get more practice and you will know everything too!!"

Elise leans in to Amelia, and smiles sweetly...and whispers, "No, Elise smart." Then pulls away and laughs riotously!!

Amelia sobs louder and with more woe-is-me flagellation....

I, of course, do the good mommy thing and reassure Amelia and reprimand Elise for making Amelia worry....but I gotta say, it was FUNNY!!! The words, the delivery, the timing, and effect...it was a spectacular dig!!!!

Today

I have been doing a lot of posting and linking over on our Facebook page, and realized that I had not touched this page for too long... The Angel Unaware giveaway came off beautifully, but I have not heard back from "Kelly" I commented on her blog, but I cannot find her email....if this is you, please email me at underwater9800 (at) gmail.com!! I'd love to get you your book!! I am disappointed in the lack of response for the possible giveaway in conjunction with the Designer Genes...I am trying to figure out a back-up plan...I'll let you know the status on that... Would you mind to comment here or on the Facebook page of how old your lovies with a bonus chromosome or other disability is? So I know if we actually have maybe a tighter grouping of ages? It will affect my ideas...Thanks!! We have some of our community that really need your prayers!! Please look at the Opportunities tab for more to the story! I am waiting on a phone call concerning Elise's school situation for next year. I will let you know more later. Please join with me to pray for the right changes for her!! I promise more soon...but I didn't want to think that I had abandoned you!! :)

Designer Genes and Designer Jeans

We've all seen them. People with disabilities that are dressed horribly, with bad haircuts, who LOOK like they have disabilities, from a distance! Clothes that underscore the fact that they DON'T look like everybody else and awful hair cuts make me nuts. With all the resources out there, you can dress your child inexpensively and you can get cute stuff!! I know!! I am the queen of consignment sales and hand-me-downs!

Please don't tell me that your child has to have a bowl cut from the 70's and sweats, because they don't! Elise is not a girly girl, so bows and skirts have been off the table for...well, ever since she could say "no"! I am standing here to tell you however, jeans can be flattering if you shop long enough. There are yoga pants or exercise suits if they want the soft and squishy option. There are flattering colors, and colored hair elastics.

If your child is willing, a hair bow or a cute hat will go a long way. Wouldn't you love your child to be stared at for rocking a fantastic bow? Or a handsome rugby shirt? Instead of a horrible haircut? Or 80's ginormous eye-glasses frames??

Seriously, this was my pet peeve even before I had Elise. I hate it when parents don't try for their kids with special needs. Even if thay advocate for them and love them, trying a little bit more in the mornings will be a support with their interactions with peers that many of them forget! Elise has had more conversations with other (typical!) kids at Kroger over her Twinkle Toes shoes (that I bought for $10 used!) than ever before!

I am proud to say not everyone falls into this trap...and I would say that I see it less and less as the years go by...but it is still out there more than I care to admit!!

I would like to give a "shout" out to those that I have seen that go out of their way to make people stare at their kids style more than their disability!

The most recently famous is Nella.
But also cheer the styling of Ellie Bear, Ben, Rozie, Sean, Angela, Alex, and Axel!

Now don't get me wrong, I am not saying we should over dress our kids. I am not saying that they should all be cookie cutters of perfect. I'm not saying that hair cuts are not a nightmare that may perhaps result in not cutting for too long, or a weird cut due to thrashing about during a cutting. I am certainly not saying that sensory or just personal style may not have an impact...but there are ALWAYS options that can be made to tweak their own styles!

So I challenge you to help your kids WORK their own style! And don't throw up your hands because it makes it extra work. It is worth it, for their own sense of self, and how the world sees them...whether it should or not.

I am going to do a stylin' giveaway...but I need help. I would LIKE to do an age-appropriate giveaway in April... One item to amp up somebody's style in every age group! FOR THE KIDS!!! I've already got tween/adult male and female covered. Could I get any volunteers for kids? Infant up to tween? Hats, Hair-bows? Really anything goes!! Please contact me with your donations. Please contact me at underwater9800@gmail.com.

Also!! If you're willing, I'd love to post a picture of your beauties working those designer genes!! Please send the pictures to the same email!

Thank you!!!

Militant...Maybe...

I was accused today of being militant for my child's rights in the school system. This was, interestingly, after their rights had been seriously and legally encroached on.

Maybe I am hyper-aggressive for my child's rights. Maybe it's for good reason. "My name is Tiffany, I am a former teacher...it's been 6 years since my last job..." No, just kidding, but sometimes it's as good an excuse as any to see monsters in the shadows.

I was actually an inclusion teacher, to boot. I have seen teachers bump parents into "suggesting" options for their child, that they came in 180 degrees from wanting. I have seen teachers leverage with fear so they don't actually SAY that they don't want a certain kid in certain places, but they were, I assure you, in charge of the direction that a meeting went in. I admit, that I have actually done it myself. I am confident when I say that I never did it without the child's best interest in mind, but I have seen teachers do it for less than noble reasons, too.

Please excuse me if I go in to every single IEP (Individualized Education Plan) IN my fighting stance. I have seen the worst. I have been in the teacher's place. I have been in the parents' place. I have had teachers try to bump me from my plans to insist on the least restrictive environment for my child. I have had fear put to leverage on me. I have almost tabled several meetings. It is my right to stop a meeting when it is not going in the direction that I want...so that I can regroup and come back with proof, with an advocate, or with an advisor.

I have been pleasantly surprised with Elise's new school. I have not had to fight for most of the things that I wanted...that I had to fight for tooth-and-nail for in other settings. I cannot tell you how disconcerting it is to have had things handed to me on a silver platter that I had to throw my weight around for in the past. It is a change I certainly welcome.

Although right now I am having an easy moment, do not think that I have relaxed my vigilance. Do not think that I will ever allow the IDEA to be breached while I am on the lookout. I know that it is a human desire to use the EASY button in life...and I know that educators are equally inclined to use it!

If you are a teacher, please understand that it is not YOU I am fighting. Please know that I respect you. Please understand that YOU handle children's opportunities, and your decisions that you make while you are craving an easy year, will have far-reaching effects on these students' futures.

If you are a parent, I beg you, please keep the paranoia. PLEASE read the million page packet of parental rights you are offered at every meeting. Keep at least one, and READ THE DARN THING FROM FRONT TO BACK AT LEAST ONCE!!!! Please, you are the guardian of your precious child's destiny, do not allow one [lazy, selfish, tired, harried, mean-spirited, people-pleasing...you pick one] person sacrifice future options. I mean it. An open future is the biggest gift that you can give your child, special or typical.

Thanks for listening to me rant, but please understand that this militant, freaky, passionate, paranoid tirade is based in wanting and demanding the best, from all the parties involved. Honest.

31 for 21: #21 Homework

Elise loves homework. LOVES it! She wants to do hers, she wants to do her brother's, she wants to make her sisters do school....she is depressed when it is Saturday and she can't go. Sunday School at church helps bridge the gap until she can get her fix.

Gabriel is disinclined to do his homework. He is disinclined to do his classwork. We are having a bit of a battle right now. Now, this is not to say that it is a shock. He is in 7th grade. I don't know a soul who didn't try to get away with a little something in middle school. But it has always been a little bit of a tussle to get him to do his work. The funny thing is, his teachers write "He is such a sweet boy. He just needs to pay attention"..."focus on his work"...."turn in____." So I guess I should be thankful that the laziness is not going hand in hand with a snarly attitude.

Elise, however, gets "She works SO hard in class! She loves the computer! If only she would keep her hands to herself." She comes home begging for TV, but she can be derailed if you offer homework. She asks if she can watch "Rat Cook" (Ratatouille), if you say "No" she'll pitch a mini fit. If you say "No, but you can do math", she'll come with out a murmur, sometimes even a "yay!"

I wish all my kids had her work ethic. She will sneak windex and try and clean the kitchen. She'll return to a project that interests her constantly until it is complete.

I have been approached by several people suggesting that I should pursue the ADHD diagnosis and consider medication. That perhaps an easy fix to her impulsivity would help her keep her hands to herself. Occasionally, I think about it. On a particularly "red" behavior week, I think how nice it would be to not battle this. I would happily allow her to drink Coke, but she doesn't like it. I encourage chocolate...the caffiene that make most people a little strung out, mellows her...it has the opposite effect on her as it does on most people. (Benedryll is like giving her Speed. It does NOT make her drowsy.) Which is a arm-chair confirmation of the diagnosis of the ADHD. On really bad days I push the caffiene. But I drag my feet on the diagnosis. I don't want her on meds. They still don't know the long term effect many of these drugs will have, we are still on their first generation. We certainly don't know the impact on kids with Downs. Their systems are so fragile, that any negative would be compounded. And I really don't want to risk losing her passion for everything! She is so awed and excited by life. And there is no substitute for Love of Life. No pill that can replace that if it is lost.

So, we continue to pursue behavior modification. And get excited by every social improvement we see.

School continues to be a reward on the behavior scale. She is SO proud to show me her returned assignments. She is thrilled to demonstrate counting or telling me information that she learned. I believe that as she gets older, she will continue grow scholastically, and being allowed to attend school will act as a giant behavior modification, and we will continue to see massive growth in that area. She is so socially driven. (Her father's daughter!)

She is reading simple sentence books.

Here is a video I made last night.
I am SO proud of my girl!!








She is growing physically like a weed and mentally by leaps and bounds...I don't know if her new teacher has more of a handle on what drives her, or if this year is a culmination "click" year. But I couldn't be more impressed with Elise's gains. My hope grows with each returned work packet and book read.

And chocolate is good for you anyway, right?

31 for 21: #9 BOOKS!!

Elise loves books. She adores to be read to. She loves to read to her sisters. She will read to herself.

She happily reads board books, magazines, paper books, chapter books, and fiction with no pictures. That's right, no pictures. She started reading simple sentence, See Dick Run, kind of stuff this school year. It was SO exciting! But the oddity is that is all she can read. Ever since she was tiny she would read non-illustrated books all by herself, she would just look through them, for hours. It was like kids do with catalogues...they know that SOMEDAY, it will all be theirs....somehow, she knows those words have to have hidden magic, and someday it will be all hers!

As a fellow book lover this excites me! I admit to aiding this obsession. I read to her regularly...and some of it is over her head, but she listens, so I keep reading...and someday, she'll read to herself...I know it.