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7 Things I Do to Prepare for My Child’s IEP Meeting

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I have been in countless individualized education program (IEP) meetings since my middle schooler first entered the school system as a tiny preschooler. While special education is intended to make school and learning accessible to all children, I quickly learned that the process itself is incredibly complex. So complex, in fact, that I used to joke that IEP stood for “in English, please” because the jargon and acronyms went ridiculously over my head.

Over the years, I’ve gradually learned how to navigate the land of IEP meetings for my child with special needs. Sure, I’d still rather go to my annual OB-GYN or dental appointment, but I’ve learned enough about my daughter’s rights to feel comfortable as her advocate. 

It doesn’t matter if your child’s IEP is three pages or 100, walking into a room of already seated educational professionals, all of whom have a stack of papers with your last name on them and become quiet when you enter, is a bit like having the lights suddenly go out.

It’s surprisingly unsettling, even as a grown-up. Perhaps it’s the endless acronyms (OMG) and procedural formalities. No matter how prepared I felt in the past, I was unsure of the best way to navigate through it when I seemed to be the only one in the dark. Then, a few years ago, a light switch flipped on in my head: I am the one person in the IEP meeting who knows my child the best, and my voice is her voice. That made all the difference to me when thinking of what an IEP means, since it’s far more empowering to think of an IEP as “I’m an Expert Parent.” 

While I have no business giving advice based on my professional background, as I’m not an attorney or a consultant, my hourly rate is simply me giving you my two cents worth as a mom who has decided that we are all experts. If you have a child with special needs, I hereby grant you permission to consider yourself a professional advocate with a masters in no nonsense. We don’t have time to figure out the meaning of each acronym, let alone what exactly schools providing free appropriate public education (FAPE) looks like for our children. But, as parents and participants in IEP meetings, we do need to understand the lay of the special education land.

My daughter has 22q11.2 deletion syndrome which means she qualifies for an IEP that should theoretically help her with everything under the sun. I would love to say our experience with special education has been seamless because when our daughter entered school, we already knew her challenges required additional support. But there is a universal truth to receiving individualized education for your child, no matter when their challenges are identified. You understand your child better than anyone, but when it comes down to knowing your rights and how to help your child succeed, the truth is that participating in an IEP meeting is overwhelming and like playing a game without having all the cards, or even the rules. 

The school isn’t offering a menu of a la carte items that your child may or may not benefit from. They give you, well, what you ask for. It’s a Catch-22 for someone who has never navigated the far off lands of special education.  

As my daughter’s annual IEP meeting approaches, the lessons I’ve learned about special education are foremost in my mind. Here is my two cents worth: 

1. Brainstorm a list of questions and concerns for the team prior to the IEP meeting and have a hard copy of the list for each team member. Walking into the meeting with something to hand out and a list of things to address at the beginning of the meeting is both empowering and helpful. The typed copy of my concerns makes me feel more in control and we stay on task. A win-win.

2. Ask the team at the beginning of the meeting how they think the services are going and what support or modifications they find most helpful for your child. I think all of the teachers and specialists benefit from hearing the answers, and I benefit from learning how the IEP essentially comes alive (or falls flat) during the school day.

3. Use a compliment sandwich if you have a specific sticking point. If I start with a small compliment, address my concern and end with a compliment (thus, the sandwich analogy), I am far more likely to make progress without someone taking offense. 

4. If you have a specific problem and it involves only one subject, it’s helpful to have a meeting with the teacher and special education coordinator prior to the IEP meeting. For my daughter, IEP meetings involve every possible specialty, from the school nurse to the speech therapist to the classroom teacher, and while I respect their time, I don’t want to feel rushed if there is an issue that warrants a longer discussion.

I realized I can request a meeting prior to the IEP meeting to discuss more in-depth concerns. Since there is no checklist of potential services for parents, don’t feel badly asking for time to brainstorm ideas or to extend the IEP meeting. 

5. If a question arises at the meeting about the best way to address a challenge for your child, I always ask the team, “What would you do if this was your child?” Ridiculously enlightening and helpful. 

6. If you don’t feel like you are making progress or being heard, reach out to the district’s special education coordinator (a.k.a. the director of student services). I guarantee their contact information is on your district’s website. 

In my experience, the director of student services has been an incredibly knowledgeable ombudsman who has a much easier time seeing the big picture because he or she can add additional resources or aides. Fun fact: The director is also responsible for being compliant. When in doubt (or distress), I copy our director on my emails, and the response I get back from any team member is guaranteed to be professional and expeditious.

7. Wear special socks. A dear friend who understood my IEP meeting angst gave me the best gift. Before I went to a meeting, she dropped off a pair of socks. The socks say, “You are not here to make friends.” I wear them every time I have a meeting (with long pants that cover the socks). I’m normally a people pleaser, but getting the proper resources and support my child needs isn’t a walk in the park. You may have to go with your gut and advocate for your child even if you’re the only one pushing for more. Don’t say “sorry” or worry about what the other meeting participants think. At the end of the day, you have plenty of friends. What you need from the meeting is progress. Believe it or not, sassy socks help.

To me, the true heart of special education law and an IEP is embodied in this quote: “Fair isn’t everybody getting the same thing. Fair is everybody getting what they need in order to be successful.” Now, the next time you’re bracing for an IEP meeting, take a deep breath and remember the true meaning of special education: infinite educational possibilities.

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Lead photo by Thinkstock Images

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What Parents Need to Know About Having a Child With a Rare Diagnosis

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Hope is only lost when we give up hoping.

It may seem right now like there can be no hope. Maybe that is all you hear from the medical professionals around you, but remember: your child’s future is still in the making. There is so much still unknown; there will forever be so much unknown.

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Charlotte’s son

Statistics are based only on what has happened previously – if we change our expectations, we change our actions and we could change children’s outcomes. Never be afraid to advocate, to promote, to share your story.

Having a diagnosis of a genetic condition no one else seems to have, a chromosome combination no one has seen or maybe not even that much of a “diagnosis” may seem lonely, but you will meet amazing parents, advocates and friends along the way. You may never meet them, but they will be there, on a group page, at a stupid o’clock of night just when you need them.

Your heart will soar when their babies succeed and break when they struggle. You will get strength and inspiration from their battles and achievements. There will be those who lose their battle along the way and your heart will break; the tears will be genuine. It doesn’t matter if others cannot understand that bond – it only matters that we are not on this journey alone.

There will be expectations for your child, which means some people will be expecting failure. Do not let them limit your child’s possibilities nor limit them yourself without first trying. Their future is unwritten and their potential is unknown, so help them to make the most, be their best and live their lives to the fullest.

author's son sitting in a stroller, wearing a red jacket and holding a green dinosaur stuffed animal
Charlotte’s son

Some days will be so hard you won’t know if you can carry on. You may feel broken by life, alone and defeated. You will survive, these times will pass, the wheel will turn and you will laugh again.

When people look at your amazing child with pity, be brave and strong. Look them in the eye, let them look your perfect child in the eye and change their opinions, challenge what society expects. Everyone deserves to know how awesome they are, and they will go away and spread that message of hope.

There is nothing “wrong” with our children. They just have bits that work differently, or bits missing, or extra bits! People will use this word – you have the right to correct them. You have a right to brag about your child.

We’re all different and that is why the world is so beautiful. Your child has made the world more beautiful simply by being in it.

They will teach those who meet them tolerance and patience; they will give you fear and heartache, sleepless nights and grey hairs; they will fill the world with laughter, joy and hope.

They are the children we were always meant to have.

My son is perfect. He is more than the number of chromosomes in his cells. He is more than a diagnosis. He is not a statistic. He is ours and nothing can take that away.

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The Children's Book I Wrote to Show Kids That Being 'Rare' Is Awesome

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As a nurse and a parent, over the years I’ve come across so many children who feel different for some reason, whether it’s due to autism, allergies, disabilities, rare conditions, chronic health conditions or whatever it is that makes them feel different, and they often feel like they are the only ones in the world who feel like they do. Even though I would say to each of these children “You aren’t the only one — so many others feel exactly like you do, and your differences can be a strength,” I felt like the message just wasn’t getting through. 

I’ve always had a passion for children’s literature and its power to shape and inspire, and had written stories for my own children over the years that I would tell to them at bedtime. So I started thinking about writing a children’s book that showed children that differences are actually very common.  That idea was in the back of my mind when one day, one of my children asked me what “rare” means. In trying to answer in a meaningful way, I started to explain how we all differ from one another and why.

It was then that I had a Eureka! moment. When children are young, we teach them that tigers are orange and grasshoppers are green — they learn to make sense of the world by putting things into boxes. I wondered: What if we could show children that tigers can be white, grasshoppers can be pink, and that those animals are awesome? What if we could show them that there are differences, beautiful differences, in every species, in every corner of the world, and importantly — in every single one of us?

It was then that I realized that I could show children that when you take a birds-eye view of the entire animal kingdom, it’s easy to see that differences are common — and something to celebrate!

That’s how “Rare Is Everywhere” came into being. It’s a book of rare animals like white tigers, blue lobsters, black jaguars and other amazing creatures that inspires children to embrace differences, and their own rare beauty.

artwork of black jaguar and spotted jaguar

The book also puts a positive spin on what makes the animals in the book “different.” That is, not only does it show that differences are common, it also highlights how some animals actually benefit from being different. For example, the white spirit bear is better at catching fish than its black bear cousins, while the all-black penguin mother stands out to her babies amongst a sea of white-chested penguins, and the black jaguar’s coat allows him to blend into the dark jungle where he roams.

artwork of two orange tigers and one white tiger laying in grass  

While I think this book will be especially meaningful to children with disabilities, autism, rare conditions, and health conditions of all kinds, I think it is also a great way to teach children about diversity in all of its forms. In the face of so much focus on the differences that divide us, perhaps there couldn’t be a better time for a book that inspires children — and all of us — to embrace differences in ourselves and others.

You can donate to the “Rare Is Everywhere” Kickstarter, and proceeds are being donated to a nonprofit called the Rare Disease Foundation to support their innovative research and treatment programs so that people with rare and undiagnosed diseases — many of them children – can live longer, healthier lives.

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When I Accepted Our 'New Normal' While Caring for My Son With a Rare Disease

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When my child was diagnosed with a rare and chronic medical condition, my life went through many changes — rapidly. I cried, I mourned and, at times, I felt despair. But eventually, I picked myself back up. I coped with the loss of the life I thought I would have, and I learned to accept my new normal.

“New normal” is a term that most parents of kids with rare and/or chronic health conditions hear often. 

Medicines four times a day? That’s our new normal. 

Testing every dirty diaper for blood? That’s part of our new normal.

Weekly doctors’ appointments, weight checks and therapies? New normal. 

Staying up until 1:00 in the morning and researching said rare diagnosis, only to go to bed at 1:15 a.m. and be woken up at 1:30 a.m. by your baby crying out in pain? Yep, new normal.

Constantly questioning every symptom and sign and flip-flopping between denial and acceptance? New normal on a daily basis.

But gradually, ever so slowly, “new normal” just becomes our “normal.”

I have been cruising at 0.5 miles per hour in the land of our normal for months now, slowly growing accustomed to the ins and outs of my son’s condition, begrudgingly realizing there’s no rushing his body’s process and learning we’re all truly passengers along for the ride of his rare condition.

And then it happened. His condition changed direction for the worse, requiring new daily treatments, creating new hourly worries, resurrecting previously buried worries and leaving us passengers headed in an unknown direction. Suddenly the familiar, comfortable proverbial rug was pulled out from under us, and we were left begging for our normal to return.

I cried.

I mourned.

I felt despair.

But now, I look at my beautiful son and realize the only thing to do is to keep moving forward. I am picking myself up, piece by piece, and realizing that while this new direction is unknown and scary, it, too, will eventually become my “new normal.” The new treatments, the new questions and the new symptoms all will become my new normal. And new normal will eventually just become normal.

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My Message as a Researcher to Anyone With a Rare or Undiagnosed Disease

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I did not know much about rare diseases until I started my new job as a researcher a few weeks back. I thought rare diseases were, well, rare. That’s what I believed. However, the more and more I look into it, I realize I was wrong.

The statistics on rare disease are quite astonishing. While each rare disease is rare on its own, when you group them all together, this is not true. There are more than 350 million people who have 7,000 identified rare diseases worldwide. In United States alone, one out of 10 people have a rare disease. Rare disease impacts more people than cancer and AIDS combined. I can sit here and throw out number after number, but the thing is that rare disease is not rare. Yet because of the title “rare” disease, there is a misconception that rare diseases only affect a very small number of people.

As I meet more undiagnosed rare disease patients, I am so inspired by their courage and their grit. Yet so many undiagnosed patients feel like they are on their own. Their doctors just continue to suggest test after test without providing any definitive answers. When the patients can’t rely on the medical professionals, they turn to Google and online forums. The patients and their family become keyboard warriors, looking and searching for any clues that might given them some clarity about their undiagnosed conditions. I hear constantly from patients who feel like they are the only one in the world with their condition and don’t have anyone to connect with. They may feel isolated, lonely and secluded.

I just want to say: don’t give up hope. There are so many people out there supporting and rooting for you. We are all out here to root and provide you with whatever is necessary. I know scientists who are working in genomics, trying to understand, diagnose and treat rare diseases. I know patients who felt hopeless once; now they are diagnosed and successfully cured. Keep searching and keep pushing. Find and connect with other rare disease patients and researchers. There is much more information and help for you. As a researcher who is trying to help rare disease patients, one of the hardest parts is finding and connecting with patients. So let your voices be heard — there are people out there who want to help you. Lastly, don’t give up. Just because your doctor doesn’t have the answers does not mean that there isn’t anyone who can help you. Keep searching and keep fighting. The world is out there for you to explore!

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Why We Need to Close the Gap in Emergency Medicine for Rare Disease

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As children, we are taught from a very young age to question everything. There is no such thing as a dumb question. We learn through asking questions. We are told we need to question authority. So why is it when it comes to the rare disease community, so many questions are left unanswered?

When you become a part of the rare disease community, you do not receive an invitation. You are not welcomed in with a cup of coffee and pinned at a new membership meeting, you’re thrust into a new realm without a roadmap. There may be others traveling in the same general direction you are, but your headlights are the only ones on the road. Suddenly there are no shortage of questions.

What does the diagnosis mean? What will the treatment look like? Who will be my doctor? My loved one’s doctor? What’s the prognosis? And the most frequent question – why?

There are over 7,000 known rare diseases and of those only five percent have FDA approved treatment. Over 30 million Americans live with one of those 7,000 rare diseases or one out of every ten Americans. Half of those 30 million are children and of those children with rare disease 30 percent won’t live to see their sixth birthday.

My daughter is one of those 15 million, and while we are grateful she has the best possible medical care and celebrated her seventh birthday this year, there are still questions about her health and future. Why?

In a time where Congress has pursued a two billion dollar funding increase for the National Institutes of Health and Rare Disease Awareness Day is recognized in 80 countries around the world, why aren’t rare disease patients properly treated in emergency situations? Why is there a gap in emergency medicine between the rare disease population – 30 million Americans – and everyone else?

My father was diagnosed with a rare disease called amyloidosis in 2013. His diagnosis came just weeks before he passed away. For two years prior, he was in and out of emergency rooms where highly trained medical staff, the best in Kansas City, could not treat him. Why? He didn’t have a diagnosis, and therefore he didn’t have a treatment protocol. But even if he had a treatment protocol, there was no guarantee that the highly trained medical staff would have had it on record and could have executed it. So we stand in the gap.

When my daughter was born in 2009, she spent a few days in the NICU for hypoglycemia and jaundice. We were released in five days and when she didn’t put on weight as expected. We increased her feedings and masked what was really going on with her.

Four months pass and we’re in the emergency room because of a single feeding I missed because I let her sleep. Suddenly ten different medical professionals are crammed into her cubicle in the emergency room, struggling to save her life while my husband and I stand there. In the gap. Five days later she is diagnosed with panhypoputuitarism and secondary adrenal insufficiency and we are the only headlights on the road. We are discharged with scant information on how to treat this rare diagnosis, which comes with pills three times a day, a daily injection, and two emergency injections.

When you are diagnosed with adrenal insufficiency, or AI, a little vial of SoluCortef is your lifeline. See, people who do not have adrenal insufficiencies naturally produce up to ten times the normal amount of a hormone called cortisol, which is vital to the maintenance of blood pressure and heart muscle tone, as well as sugar and salt balance, during times of physical stress. When illness or injury occurs in adrenal insufficient individuals, however, an immediate additional dose of glucocorticoids (hydrocortisone) is necessary to avert adrenal crisis. Delaying treatment means shock, heart failure, coma and/or death. We’re not talking about delaying treatment for a few hours, we’re talking 30 minutes or less.

For around eight dollars a syringe, you can buy this shelf-stable med and carry it with you. It’s literally life insurance for AI patients.  So we buy the meds. We get the medical bracelets. We put stickers in our car windows, magnets on our tailgates and labels on her seatbelt.

We hole up at home and read everything we can get our hands on regarding her treatment and prognosis. We talk to doctors. We explain her condition to family. And we’re feeling like we can handle this diagnosis. We can handle the daily shots and meds and treatment protocols. We have several emergency injections on hand and we’re ready for the worst. If she breaks her arm, give the shot. If she has uncontrollable vomiting, give the shot – the list goes on, but we’re confident – we’ve got this.

Now before you all get excited and think the happy ending is just around the bend, it’s not. Today the gap for treatment of rare disease patients in an emergency medical situation looks much different than for the “typical” population because even though we never leave the house without these kits, they are useless. They are useless because without proper treatment protocols, EMS will not administer them in an accident.

Imagine. Seven years of appointments, treatments and tests. Imagine growing up and not knowing any different. Imagine being seven and battling a rare disease while your parents drag you across the country to meet with doctors while looking for a diagnosis for a new condition that you’ve developed.

You’d probably want a break, right? Maybe it would be nice to jump in the car and head out with the family to grab an ice cream cone. But life happens. There’s a car accident. You break your arm, but mom and dad are out cold. Who will give you that shot? Who will prevent your medical crisis, prevent a coma, and save your life? Who will stand in the gap?

Typically, you might think the highly trained EMS staff will do it. You can hear their sirens in the distance, the Calvary has arrived.

But there are no protocols in place. The tool is there and everyone knows how to use it, but because there aren’t printed instructions, no one is allowed to use it.

And we’re not the only ones affected. There are 30 million Americans who play Russian roulette with their lives every time they leave their house. Drive their car. Cross their county line. Ride their bike.

If we are to question everything, in my opinion, it’s worth noting that the two billion dollars in NIH funding for rare disease research means nothing. It means nothing at all to me if we can’t develop emergency protocols that allow our highly qualified EMS providers nationwide to use the tools at their disposal to save lives. A piece of paper might be all that stands between rare disease patients’ lives and the research pool NIH has to draw from.

So what’s the solution?

We are pushing to create a National Emergency Treatment Database for Chronically Ill and Rare Disease Patients that would help emergency physicians access treatment protocols for the 30 million Americans who live with a rare disease.

EMS could have a quick access to show limited information such as Emergency Treatment Protocols and medications to be able to provide emergency treatment in the field. Patients would identify themselves as registry members via medical bracelets, QR code stickers on their vehicles and driver’s licenses, and local notification of EMS.

Currently, EMS protocols for rare disease patients are handled on a county-by-county, state-by-state basis. This means that there is no continuity of care when a patient travels outside of their home area. A patient can do everything right – carry their emergency meds, wear a medical id, inform their local EMS, even mark their vehicle – but that means nothing if EMS cannot treat due to a lack of protocol. This lack of information means delayed treatment and possible death. There is no reason an EMT should ever stand in the field with medications in hand and watch their patient die because they don’t have a piece of paper permitting them to treat the patient.

Going forward, we might not be able to close the gap between rare disease patients and the rest of the population when it comes to emergency treatments. But we can certainly fill it with the lives we save by establishing a national rare disease database.

I am currently lobbying Congress to establish such a database, but I need help to demonstrate how far-reaching the lack of protocols really is. Beginning August 1st, and for the next year, I have started wearing a different non-profit organization’s t-shirt every day to represent those affected by rare disease and/or chronic illness. Each day, we will use social media to share info about the disease, organizations that support that patient population, and the beautiful faces of people battling that condition, as well as their stories. At the end of the year, we’ll use those shirts to create a quilt that will be presented to the National Institutes of Health to commemorate our year of awareness.

How can you get involved? Easy. Join us. Check our calendar to see if your chronic or rare disease is currently represented on the #Wear4Rare calendar. If it’s not, book a slot. If it is, please email us at [email protected]. We want to tell your story! We would also love to add more non-profit organizations to our Database Coalition – please join us. Together we can shed light on this gap and we can close it with the lives we save.

We want to hear your story. Become a Mighty contributor here.

Lead photo source: Thinkstock Images

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