Make a list.
PLAN for your child's IEP. Make a list of things you want to ask, ask for, or challenge. That way you won't forget no matter where your child's teacher tries to take the meeting.
Ask friends in the same school system. Ask other parents of your child's friends. Ask parents of older children. Google. Search. Read articles. Post on special needs boards, nationwide as well as locally.
And when you feel soggy and saturated with brilliant information:
Number your requests.
Star those that you will NOT leave without.
Bullet those you would like.
And add cherries that would make you happy, but aren't that important.
Then ask for them ALL. And if you get it all, you have an amazing school system, or you didn't ask for enough (take notes for next year). If you don't get it all, you have demonstrated that you are willing to negotiate and compromise. If you have to throw down and fight, you have a hierarchy of what's worth it, and you won't get caught up in the emotion of the moment.
I'm sure you've heard stories about people in battle or fights who start shooting, or hacking, or hitting, or whatever, who literally lose the ability to determine who are their friends and who are their enemies...or who put themselves at risk in a mad rush at the enemy that then leaves them cut off from supplies or support?
This can happen in IEPs.
You can start swinging because of the right things, but end up damaging your credibility and your child's education because you got caught up about winning, and not your child...notes protect you... Consider it your battle plan, and try not to diverge without good reason.
I'm definitely NOT saying that there aren't things worth going down fighting for...I'm just saying make sure you know what's worth it.
Thursday, October 4, 2012
Wednesday, October 3, 2012
31 for 21: #3 You. With Me. Things I Learn in IEPs
Don't forget to Listen.
I know all of us parents worry about those across the table hearing us. But don't forget you can learn a lot about your child by hearing how they interact with others. You can learn if they fight for their own independence. You can learn if they play the victim. You can learn if they have resources that you have been hitherto unaware of. I am sure that all the teachers and therapists think that I wander off topic during meetings, but I have found sharing funny stories on your child at home and listening to funny stories of things that happen at school can be exceedingly revealing. You can learn about your child and, also, by their tones, and the words used, you can comprehend the deeper perspective that the teachers, principals, and therapists have on your child. Plus, it keeps it positive and a little fun...and it can add to the cameraderie among those serving your child.
I found out something interesting about Elise at the last IEP meeting. Not only is she licking all metal surfaces at school as well as at home...we will be pursuing testing for a lack of mineral metals in her system as an explanation for the possible pica. But she has figured out a new system for Activity Support. On her own.
Last year, she decided that she was old enough to get to her class on her own. There were "tails" assigned to her, so she didn't run off to somewhere weird, like another classroom or the kitchens... They did end up having to step in and head her off a couple of times...thereby revealing their presence... This made her very angry, and she would stop the tail and reprimand them with stern "NO"s with a dramatic finger point. That resulted in phone chains. The secretary would call a principal whose office was partway, who would call her classroom teachers...there would be time limits placed on the travel times...and the tagged adult would go looking for her if she failed to show within the time window. Toward the end of the year there was only a phone call between the secretaries and her classroom teachers. She was so proud of her independence.
THIS YEAR, Elise has decided that she has proved her independence, and wants company. She asked the secretaries to walk her down one day, and they told her no, to go ahead and go to class. So, my resourceful little cookie went around the office hall, in the back door, through the office labyrinth, and into the seecretaries island. She confronted them, and pointed at one and said, "You. With me. Come." And that secretary came. Success. And so this is her new MO in the mornings. Each morning, she sneaks in the back way and demands that one of them come with her, with an official police point and finger cock. And they do her bidding. Every morning. And look forward to it.
Rotten Cookie.
I know all of us parents worry about those across the table hearing us. But don't forget you can learn a lot about your child by hearing how they interact with others. You can learn if they fight for their own independence. You can learn if they play the victim. You can learn if they have resources that you have been hitherto unaware of. I am sure that all the teachers and therapists think that I wander off topic during meetings, but I have found sharing funny stories on your child at home and listening to funny stories of things that happen at school can be exceedingly revealing. You can learn about your child and, also, by their tones, and the words used, you can comprehend the deeper perspective that the teachers, principals, and therapists have on your child. Plus, it keeps it positive and a little fun...and it can add to the cameraderie among those serving your child.
I found out something interesting about Elise at the last IEP meeting. Not only is she licking all metal surfaces at school as well as at home...we will be pursuing testing for a lack of mineral metals in her system as an explanation for the possible pica. But she has figured out a new system for Activity Support. On her own.
Last year, she decided that she was old enough to get to her class on her own. There were "tails" assigned to her, so she didn't run off to somewhere weird, like another classroom or the kitchens... They did end up having to step in and head her off a couple of times...thereby revealing their presence... This made her very angry, and she would stop the tail and reprimand them with stern "NO"s with a dramatic finger point. That resulted in phone chains. The secretary would call a principal whose office was partway, who would call her classroom teachers...there would be time limits placed on the travel times...and the tagged adult would go looking for her if she failed to show within the time window. Toward the end of the year there was only a phone call between the secretaries and her classroom teachers. She was so proud of her independence.
THIS YEAR, Elise has decided that she has proved her independence, and wants company. She asked the secretaries to walk her down one day, and they told her no, to go ahead and go to class. So, my resourceful little cookie went around the office hall, in the back door, through the office labyrinth, and into the seecretaries island. She confronted them, and pointed at one and said, "You. With me. Come." And that secretary came. Success. And so this is her new MO in the mornings. Each morning, she sneaks in the back way and demands that one of them come with her, with an official police point and finger cock. And they do her bidding. Every morning. And look forward to it.
Rotten Cookie.
Tuesday, October 2, 2012
31 for 21, 2012: #2 Tiffany's Top Ten Tips for IEPs
One of the things that many people forget when faced with the IEP?
You are in charge.
Get there early and sit at the head of the table. That way you don't feel rushed or discombobulated, and it demands that you lead the discussion. You, of course, can offer the opening to the teacher or principal, but that way you do not have to try and get control later, you merely take it back.
THE IEP IS YOURS.
You can table (call for an early end without signing off) an IEP meeting if you don't like where it is going. You can table it if you feel that you need an advocate. You can table it if you want to do more research. You do NOT HAVE TO SIGN ANYTHING. The meeting is always yours and it's main directive is to make your child as independent and successful as possible. YOU KNOW YOUR CHILD BEST. It doesn't matter what the teachers say, it doesn't even matter what the tests say. YOU SET THE TONE.
It is your responsibility to fight for your child until you have armed them to fight for themselves. Period. And if you don't know what to do, there are people out there who do and who will help you. All you have to do is ask. There are hundreds of support forums...and many "senior" blogging mamas who would love to support and mentor you...there are lawyers who specialize in special needs and are called "advocates", if it were to come to that. But you are the specialist on your child. PLEASE don't forget that. EVER.
You are in charge.
Get there early and sit at the head of the table. That way you don't feel rushed or discombobulated, and it demands that you lead the discussion. You, of course, can offer the opening to the teacher or principal, but that way you do not have to try and get control later, you merely take it back.
THE IEP IS YOURS.
You can table (call for an early end without signing off) an IEP meeting if you don't like where it is going. You can table it if you feel that you need an advocate. You can table it if you want to do more research. You do NOT HAVE TO SIGN ANYTHING. The meeting is always yours and it's main directive is to make your child as independent and successful as possible. YOU KNOW YOUR CHILD BEST. It doesn't matter what the teachers say, it doesn't even matter what the tests say. YOU SET THE TONE.
It is your responsibility to fight for your child until you have armed them to fight for themselves. Period. And if you don't know what to do, there are people out there who do and who will help you. All you have to do is ask. There are hundreds of support forums...and many "senior" blogging mamas who would love to support and mentor you...there are lawyers who specialize in special needs and are called "advocates", if it were to come to that. But you are the specialist on your child. PLEASE don't forget that. EVER.
Monday, October 1, 2012
31 for 21, 2012: #1 Tiffany's Top Ten Tips for IEPs
I am not missing the irony of this post today. I decided to organize my closet...again... And realized that in my casual clothes, I have a couple pairs of jeans, and two shirts cuts in 5 different colors...and flip flops. You could probably turn me over to What Not To Wear, and I would make the cut...not something to be proud of...BUT when it comes to my daughter, I willingly utilize my clothes for power. Which brings us to the first of my Ten IEP Tips.
Number One Tip at the IEP Meetings:
Dress like you are in charge.
I know this sounds silly, but a lot of IEP power plays are mental. And the first power play is a power suit. I am not advocating that you wear a real suit, like the stereotypical interview suit...but a suit of clothes that calls for respect, and that makes you feel strong.
YOU CANNOT GO TO AN IEP IN YOUR YOGA PANTS AND WORKOUT SHIRT AND DEMAND RESPECT.
You are trying to sell your ideas to professionals. You have to dress like you are a professional.
There are two types. The one that makes you look like you are in charge. And the one that plays up your features.
The one that makes you look like you are in charge. By this, your dress clothes that are well-fitted, good jewelry, good accessories. You wear more formal clothes. Maybe even wear your church clothes: skirt, slacks, button shirts. You look visibly put together, even if you are feeling ragged and afraid of the meeting's outcome. You look like you are informed. You look like you can take the opposition. (Like a lawyer or a principal.) I usually choose this one the first meeting that I have with my child's teacher and/or their principal. I always choose this if I don't like the principal.
The other kind is to pick a few features that are striking. Ones that make you feel GOOD. You still have to dress like you are together, but you can play in a little bit more comfortable territory. In this world, more a business casual: chic jeans, collared top or blouse, high heels, or nice flats and a casual skirt...This version is as much a mental game with yourself as with those across the table. You are boosting your own confidence, like how you dress on a date that you really want to go well. I use this if I know and like everyone at the meeting. It invites their confidences, but it assures that you are still a force to be reckoned with.
I usually play the tall card. I am 5'8". I wear stack heels, and you can seriously play with other peoples' insecurity if you can throw out a bonus 3 inches. The power in looking down on someone cannot be overstated. I wear strong eye make-up, and no lipstick. I want my eyes to demand eye-contact. The clothes I wear depend on my mood. If I think that I may cry in a meeting, I wear my most uncomfortable shoes so I am hyper aware of my feet. I feel more aware of my feet than my emotions that way. Same goes for a scratchy sweater or uncomfortable clothes.
I make sure that I am as good as I can sell myself, so the people on the other side of the table cannot write me off at first glance.
First impressions are important. I am sorry, but we are all human, and we assess the competition at sporting events, in politics, and even at your kid's IEP meeting. And every little bit matters.
Number One Tip at the IEP Meetings:
Dress like you are in charge.
I know this sounds silly, but a lot of IEP power plays are mental. And the first power play is a power suit. I am not advocating that you wear a real suit, like the stereotypical interview suit...but a suit of clothes that calls for respect, and that makes you feel strong.
YOU CANNOT GO TO AN IEP IN YOUR YOGA PANTS AND WORKOUT SHIRT AND DEMAND RESPECT.
You are trying to sell your ideas to professionals. You have to dress like you are a professional.
There are two types. The one that makes you look like you are in charge. And the one that plays up your features.
The one that makes you look like you are in charge. By this, your dress clothes that are well-fitted, good jewelry, good accessories. You wear more formal clothes. Maybe even wear your church clothes: skirt, slacks, button shirts. You look visibly put together, even if you are feeling ragged and afraid of the meeting's outcome. You look like you are informed. You look like you can take the opposition. (Like a lawyer or a principal.) I usually choose this one the first meeting that I have with my child's teacher and/or their principal. I always choose this if I don't like the principal.
The other kind is to pick a few features that are striking. Ones that make you feel GOOD. You still have to dress like you are together, but you can play in a little bit more comfortable territory. In this world, more a business casual: chic jeans, collared top or blouse, high heels, or nice flats and a casual skirt...This version is as much a mental game with yourself as with those across the table. You are boosting your own confidence, like how you dress on a date that you really want to go well. I use this if I know and like everyone at the meeting. It invites their confidences, but it assures that you are still a force to be reckoned with.
I usually play the tall card. I am 5'8". I wear stack heels, and you can seriously play with other peoples' insecurity if you can throw out a bonus 3 inches. The power in looking down on someone cannot be overstated. I wear strong eye make-up, and no lipstick. I want my eyes to demand eye-contact. The clothes I wear depend on my mood. If I think that I may cry in a meeting, I wear my most uncomfortable shoes so I am hyper aware of my feet. I feel more aware of my feet than my emotions that way. Same goes for a scratchy sweater or uncomfortable clothes.
I make sure that I am as good as I can sell myself, so the people on the other side of the table cannot write me off at first glance.
First impressions are important. I am sorry, but we are all human, and we assess the competition at sporting events, in politics, and even at your kid's IEP meeting. And every little bit matters.
Sunday, September 30, 2012
Why Cancer Can Be Sweet #4 Repost
For my final post for Childhood Cancer Awareness, I would like to do a shout out for Medicine. And more importantly, those who make it magical.
I used to think medicine was a more exact science. You get sick, they make it better. Problem. Medicine. Healing. Voila.
In truth, that's not how it works.
Over the last 9 years, I have been up to my eyeballs in medicine. Whether I wanted to be or not. I had the pleasure of volunteering and shadowing in the medicine community throughout high school and college, but I did not fully appreciate what "science" really meant.
Science really only promises a clear problem solving pathway while searching for an answer. Wikipedia defines it: "(from Latin: scientia meaning "knowledge") is a systematic enterprise that builds and organizes knowledge in the form of testable explanations and predictions about the universe."
TONS of medical break-throughs have come about by accident. Penicillin. Chemotherapy, itself, was a by-product of World War I's Mustard Gas. No Lie.
But the sweet part of cancer that I wanted to highlight are the doctors, nurses, and techs. Anybody can hand out miracles. Joe on the street can pass out drugs. The magnificence of the Oncology profession is that they aren't miracle workers. They will lose kids. They may not win every time. But they come back to work every day. Most of them with a smile and a hug for all those they care for. They constantly steep themselves in loss and illness, sadness and side effects; yet they constantly hand out hope. They are the heroes in the medical world, not because because Oncology is more important, but because they are the Foot Soldiers that unfailingly fight. Day after day, after day.
"Foot Soldiers are those specifically trained for the role of fighting on foot to engage the enemy face to face and have historically borne the brunt of the casualties of combat in wars." - Wikipedia
Is that not the most heroic??
The nurses and techs are the same way. They love their kids and make sure their little bodies are fighting valiantly. They support the parents, they smile, and share normalcy. They fight the cancer dragon face-to-face every day. And come back to fight another day.
The Medal of Honor is given for the "conspicuous gallantry and intrepidity at the risk of his or her life above and beyond the call of duty while engaged in an action against an enemy".
Perhaps they aren't risking their physical life to battle cancer, but I am sure that they face a significant emotional toll. If it was my call, I'd award every last one of those on the floor with Elise with the medical equivalent of the Medal of Honor.
And so, on the final day of Why Cancer is Sweet, I'd like to raise a cheer for Elise's Doctors, Fellows, Nurse Practitioners, Nurses, and Techs. Thank you for fighting with an indomitable spirit for my child's life. Thank you for weathering all the storms. Thank you for wielding the science as a weapon to produce a miracle. Thank you for bringing joy. Thank you for caring. Deeply. Over and over. Every time. Equally.
You are Protectors. Defenders. Warriors. Heroes.
Thank you.
I used to think medicine was a more exact science. You get sick, they make it better. Problem. Medicine. Healing. Voila.
In truth, that's not how it works.
Over the last 9 years, I have been up to my eyeballs in medicine. Whether I wanted to be or not. I had the pleasure of volunteering and shadowing in the medicine community throughout high school and college, but I did not fully appreciate what "science" really meant.
Science really only promises a clear problem solving pathway while searching for an answer. Wikipedia defines it: "(from Latin: scientia meaning "knowledge") is a systematic enterprise that builds and organizes knowledge in the form of testable explanations and predictions about the universe."
TONS of medical break-throughs have come about by accident. Penicillin. Chemotherapy, itself, was a by-product of World War I's Mustard Gas. No Lie.
But the sweet part of cancer that I wanted to highlight are the doctors, nurses, and techs. Anybody can hand out miracles. Joe on the street can pass out drugs. The magnificence of the Oncology profession is that they aren't miracle workers. They will lose kids. They may not win every time. But they come back to work every day. Most of them with a smile and a hug for all those they care for. They constantly steep themselves in loss and illness, sadness and side effects; yet they constantly hand out hope. They are the heroes in the medical world, not because because Oncology is more important, but because they are the Foot Soldiers that unfailingly fight. Day after day, after day.
"Foot Soldiers are those specifically trained for the role of fighting on foot to engage the enemy face to face and have historically borne the brunt of the casualties of combat in wars." - Wikipedia
Is that not the most heroic??
The nurses and techs are the same way. They love their kids and make sure their little bodies are fighting valiantly. They support the parents, they smile, and share normalcy. They fight the cancer dragon face-to-face every day. And come back to fight another day.
The Medal of Honor is given for the "conspicuous gallantry and intrepidity at the risk of his or her life above and beyond the call of duty while engaged in an action against an enemy".
Perhaps they aren't risking their physical life to battle cancer, but I am sure that they face a significant emotional toll. If it was my call, I'd award every last one of those on the floor with Elise with the medical equivalent of the Medal of Honor.
And so, on the final day of Why Cancer is Sweet, I'd like to raise a cheer for Elise's Doctors, Fellows, Nurse Practitioners, Nurses, and Techs. Thank you for fighting with an indomitable spirit for my child's life. Thank you for weathering all the storms. Thank you for wielding the science as a weapon to produce a miracle. Thank you for bringing joy. Thank you for caring. Deeply. Over and over. Every time. Equally.
You are Protectors. Defenders. Warriors. Heroes.
Thank you.
Monday, September 17, 2012
Why Cancer Can Be Sweet #3 Repost
The third reason cancer can be sweet is the allowance to see people look past themselves. To give.
There is a lot of push these days for the government to step in and take care of those in need. I am not going to get into a lot of political discussion, but I will say, I think that short circuits people's desire to take care of others. People like to DO things for those in need, as evidenced by crisis situations...
When there is something REALLY not a part of the day to day, people feel helpless. The evidence of their humanity and frailty is truly visible. And most people will wrap those vulnerable with generosity and a closing of the ranks around them. To protect. It is a beautiful thing.
Cancer was sweet because I learned about these givers. I saw those who fed our bodies and our hearts. I saw those who gave us the time to run to the store. I saw those who would go on milk runs especially for us when Elise's ability to fight infection was nil and we couldn't go out. We were given financial help for the surprise expenses in gas and parking passes... I learned who my true friends were. I learned who loved others more than themselves. I learned who carries God's love to others. And I learned just how important that really is.
I received notes from churches who had prayer requests and took them seriously. We received notes from a particular church (not even ours!) who prayed for people every week and sent a post card or note telling you that you were prayed for. We received one to three cards every single week for 7 months. I know not one single person whose note told us that they had prayed for Elise or our family, but I am forever grateful for them. I received notes and emails from people telling me that my child would be wrapped in prayer. I have them all still.
I got personal phone calls from our pharmacy who worried when we were late to collect Elise's "home" medicines when she was still fighting infection and couldn't get released from the hospital yet. And you could actually hear their relief in their voices when they heard that everything was still okay.
I admit I received stilted phone calls from friends who were audibly uncomfortable with our not-perfect life...who never returned...but more often, I received phone calls from new and old friends that balanced between listening to the awful and not shying away and those giggled over our new somewhat funny situations. We would laugh about nurse practitioners who were crazy and the fact that we went to the library that day. And they managed to share just enough of their life that that they shared their normal, and didn't rub it in. I got "new" friends out of it. Nurses, other parents, and acquaintances that reached out to become true friends.
In a nutshell we got to Christ's body at work. Being hurting and vulnerable was truly worth it to see this miracle! We got to see HIM up close in this manner and He was beautiful!
There is a lot of push these days for the government to step in and take care of those in need. I am not going to get into a lot of political discussion, but I will say, I think that short circuits people's desire to take care of others. People like to DO things for those in need, as evidenced by crisis situations...
When there is something REALLY not a part of the day to day, people feel helpless. The evidence of their humanity and frailty is truly visible. And most people will wrap those vulnerable with generosity and a closing of the ranks around them. To protect. It is a beautiful thing.
Cancer was sweet because I learned about these givers. I saw those who fed our bodies and our hearts. I saw those who gave us the time to run to the store. I saw those who would go on milk runs especially for us when Elise's ability to fight infection was nil and we couldn't go out. We were given financial help for the surprise expenses in gas and parking passes... I learned who my true friends were. I learned who loved others more than themselves. I learned who carries God's love to others. And I learned just how important that really is.
I received notes from churches who had prayer requests and took them seriously. We received notes from a particular church (not even ours!) who prayed for people every week and sent a post card or note telling you that you were prayed for. We received one to three cards every single week for 7 months. I know not one single person whose note told us that they had prayed for Elise or our family, but I am forever grateful for them. I received notes and emails from people telling me that my child would be wrapped in prayer. I have them all still.
I got personal phone calls from our pharmacy who worried when we were late to collect Elise's "home" medicines when she was still fighting infection and couldn't get released from the hospital yet. And you could actually hear their relief in their voices when they heard that everything was still okay.
I admit I received stilted phone calls from friends who were audibly uncomfortable with our not-perfect life...who never returned...but more often, I received phone calls from new and old friends that balanced between listening to the awful and not shying away and those giggled over our new somewhat funny situations. We would laugh about nurse practitioners who were crazy and the fact that we went to the library that day. And they managed to share just enough of their life that that they shared their normal, and didn't rub it in. I got "new" friends out of it. Nurses, other parents, and acquaintances that reached out to become true friends.
In a nutshell we got to Christ's body at work. Being hurting and vulnerable was truly worth it to see this miracle! We got to see HIM up close in this manner and He was beautiful!
Saturday, September 15, 2012
What is Down Syndrome? for my 6 year old
As I have said before, Amelia and Charlotte are beginning to realize more and more that Elise is not like everybody else... And on the evening of Sept. 10, her cancer-free anniversary, Amelia asked again, over cake. And this time, I gave her a Longer, More Complicated Answer. Because it is coming up more often, she is apparently craving more information...and it impressed my mother. Now, I realize it's my mom, and my "brilliance" is always magnified more than it actually is...because it's my Mama...but the way I said it, made a visible impression, and she has gone back to it several times since...and so I decided to post it here, in case it really is brilliant.
"Why can't Elise talk or act like me?"
"Because Elise has Down Syndrome. It is something that confuses her body, so it takes her longer to learn things. She can learn all the things you can, it just takes her longer."
"But what is Down Syndrome?"
"You have something called chromosomes that work together to make all your body parts and help your brain work. Elise has an extra chromosome, and it confuses her whole body. It's kind of like when EVERYBODY is talking really loud, all at the same time...and you slowly have to ask everybody to be quiet and and listen to each person, one at a time...which takes longer than if everybody took their turn talking...right? Make sense?"
<<Amelia, nodding>>
"That's what her extra chromosome does to her body, it confuses her talking and her learning...and why she has a hard time zipping and buttoning, why she doesn't remember not to do dangerous things or act like an older girl, it's even why she is sick more often (it even confuses her inside body parts, so it can't fight being sick like you can)...It's because her extra chromosome is yelling at her and confusing her."
"Oh, okay." <<returns to eating cake>>
So there you have it. The bare bones version of Down Syndrome.
(And yes, I am absolutely aware that I used 'confuse' about 70 times too many, but, you have a limited vocabulary when explaining to a 6 year old.)
"Why can't Elise talk or act like me?"
"Because Elise has Down Syndrome. It is something that confuses her body, so it takes her longer to learn things. She can learn all the things you can, it just takes her longer."
"But what is Down Syndrome?"
"You have something called chromosomes that work together to make all your body parts and help your brain work. Elise has an extra chromosome, and it confuses her whole body. It's kind of like when EVERYBODY is talking really loud, all at the same time...and you slowly have to ask everybody to be quiet and and listen to each person, one at a time...which takes longer than if everybody took their turn talking...right? Make sense?"
<<Amelia, nodding>>
"That's what her extra chromosome does to her body, it confuses her talking and her learning...and why she has a hard time zipping and buttoning, why she doesn't remember not to do dangerous things or act like an older girl, it's even why she is sick more often (it even confuses her inside body parts, so it can't fight being sick like you can)...It's because her extra chromosome is yelling at her and confusing her."
"Oh, okay." <<returns to eating cake>>
So there you have it. The bare bones version of Down Syndrome.
(And yes, I am absolutely aware that I used 'confuse' about 70 times too many, but, you have a limited vocabulary when explaining to a 6 year old.)
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