6 Essentials for Being a Successful 'Mommy-Advocate'

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Gene Sequencing and IEP Goals — what do these things have in common? In one 24 hour period, I sat in rooms with people who have the power to make or break my kids. Experts in their fields; caring people with too much to do in a single day.

Connecting the dots and making sure nothing is missed is my job. I’m the mom of kids with disabilities. I hold the title of, “mommy-advocate.”

I’ve been introduced in pretty impressive ways during my 20+ year professional career: director of nonprofit agencies, graduate of prestigious leadership programs, Champion of Change. But let me tell you, “mommy-advocate” still scares me.

Nobel prize winner Elizabeth Blackburn found that “highly stressed women experienced the equivalent of an additional 9 to 17 years of aging when compared to non-stressed women” in her study of mothers parenting chronically ill children versus mothers parenting healthy children. Other studies have compared this stress to that of combat soldiers. Dads do not face the same stress levels, as mothers tend to be the main caregivers.

Marsha Mailick Selzer, an authority on families of children with developmental disabilities, describes this phenomena as “the physiological residue of daily stress,” in a longitudinal study of families of individuals with autism. For many years, I’ve described our journey as “hard hat parenting.” The only way to survive the journey and even thrive (yes, it’s possible) is to be strategic.

I remember the first Individualized Education Plan (IEP) meeting like it was yesterday, although it was nearly nine years ago. An IEP is the written document describing the child’s educational needs and the strategies to be employed to meet those needs. Special education is protected by the federal Individuals with Disabilities Education Act (IDEA).

My son was in second grade at a good public elementary school. He had been sick his entire life, and we were trying desperately to find an environment where he could be successful in school. He missed over 100 days of both, kindergarten and first grade, due to infections which is quite typical for a child with primary immune deficiency, even if they are receiving immunoglobulin infusions or IVIG regularly, like my son was.

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The school was not happy about his doctor-excused absences but neither were we! The school had refused to move forward with the assessments in a timely manner which was legally within their rights as they have nearly an entire school year to perform these assessments. We wanted Ethan’s educational needs to be met so we private paid for the evaluations using a provider the district recognized as an expert. I proceeded to the meeting with these documents in hand, as well as the knowledge that Ethan had a sensory integration disorder as well as developmental delays, in addition to his medical issues.

During this season of my life, I was the Director of Operations for a regional children’s advocacy organization which basically meant I was a professional children’s advocate. Part of that position meant I was responsible for grants and programs that included advocating within the school system for children with disabilities.

Let me recap all of the advantages I had in preparation for this first IEP meeting: I was educated and knowledgeable about the legal rights of children with disabilities in educational settings, I had the ability to private pay for an assessment and I had professional credentials that provided credibility. I was also shaking in my boots when I left my office for the meeting.

Why?

The meeting was adversarial from the start as the school administration did not want to provide the services I was requesting for my child. Services require staff-time and money and many schools do not choose to prioritize children with disabilities even when federal law requires it. At the meeting, I am the parent (non-professional), and I am sitting at the table surrounded by educational professionals — teachers, administrators and district level personnel — so I’m severely outnumbered. That is a really scary place to be.

Years later, after building some confidence in myself and the process, I stood up towards the end of an IEP meeting for my daughter, quietly gathered up my documents, and said calmly, “Thank you for your time today. I want to let you know the next step for me here is to prepare the formal appeal letter that will go to the Superintendent.” That statement was quickly followed by a request for me to sit back down and a commitment to reach an agreement on my daughter’s services.

In contrast to the school described above, my daughter’s current school is amazing. They are truly committed to meeting her needs and have agreed to every single request for services I’ve made. Honestly, the meetings are still hard. Sitting around the table full of professionals discussing your child’s weaknesses is stressful. Having people scrutinize the way you parent, the medication decisions you’ve made, the therapy you’ve selected — that’s hard stuff. Justifying decisions that have been carefully considered based upon years of experience with your own child is beyond description. Yet, it’s also one of the most important things a “mommy-advocate” must do.

Less than 24 hours before this IEP meeting at my daughter’s school, my son and I were sitting in the office of an ultra-rare disease specialist. A geneticist we had been waiting to see for months. My job was to quickly summarize 16 years of Ethan’s life after conception and do it in a way that compelled this very busy doctor to take on Ethan’s case. All my powers of negotiation and recollection were required. If he takes the case, he will order complete genome sequencing and the medical school where he teaches will cover the exorbitant costs. All of the appropriate records must be at my fingertips and in my brain. The stress of the incredibly important moment must be pushed aside as I tell the story and the PTSD style recollection of his birth and illnesses must be overcome.

I’m happy to say the geneticist did take Ethan’s case and Jenna’s fifth grade IEP, which will transition her to middle school next year, is complete and ideal. Recollecting the complex set of skills needed to pull off these impressive feats, I’ve narrowed it down to six essentials:

1. Be prepared.

Create a rolling summary that can easily be updated when new information arises. I use a reverse-chronological order document in Microsoft Word that I update after every doctor appointment, major illness, change in medication and educational evaluation.

2. Know your stuff.

Have a clearly defined desired outcome in mind for the meeting. What do you want from the school or the doctor? Be specific and have this written down in advance so if you become emotional, you can quickly glance at this goal and get yourself back on track.

3. Look the part.

First impressions are key. Dress in a manner similar to the way the professionals will be dressed. Speak with authority using proper terms demonstrating you are educated on the topics at hand.

4. Make eye contact.

If communication is represented by 100 percent, words are only seven percent! Your body language and tone of voice are critical and represent 54 percent and 39 percent respectively. Making eye contact, having good posture, leaning in to the conversation — all of those things matter when you are working hard to be understood and to understand.

5. Be positive.

If you approach the interaction with negativity in any way, the professional automatically feels overwhelmed and sees you as less of a partner. In order to be perceived as a proactive problem-solver worthy of the partner status with the professional, you must remain positive.

6. Be appreciative.

Regardless of the outcome of the meeting, thank the professional for their time and for caring about your child. These people have very difficult jobs and more work to do in a day than they have time. Acknowledge that, and let them know you are there to truly be part of the solution for your child.

Hard-hat parenting is not for the timid, but with the right planning and strategies you can have successes for your child and help your family thrive.

I need to go now and get the records updated for this week’s set of appointments and meetings.

Follow this journey at Chasing Surrender

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To Those Who Stand With Me as I Fight Against My Rare Disease

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My chronic, rare disease is with me every day. There is not one day that I get to take a break and forget of its existence. It takes intense focus and stamina to fight an everyday battle, to manage the unmanageable and stay one step ahead of the unpredictable. Health always has to be the number one priority, with everything else falling in line behind it because without my health, I have nothing. It can be exhausting and extremely scary.

I understand that for all of us, rare illness or not, the future is unknown. But for those of us living with a rare illness, the stability of that future is also unknown. I don’t know exactly what things like having children or old age looks like for me. I don’t know what the future regarding my medication or potential new therapies will be. There are limited resources, if any, to get the answer to these questions. I often question, “Is it even possible?” I was raised to believe that I could do anything I set my mind to and I truly believe that. I use that mindset to motivate myself every day to keep going despite the challenges. But living with a rare disease is a whole other matter not one only of the mind, but one of the body. It is hard to not let my mind wander to the idea that one day my luck and  my relatively good health will run out, and my body, which is missing key elements to survive, will give up on me. Everything is a big question I try not be concerned about – but naturally, I worry. It keeps me up every night and impacts every decision I make.

Most days, I fight rare disease with no hesitation or sense of self-pity. But some days, it is just too much to even process: the pain becomes unbearable or my emotions of feeling useless take over. Sometimes both. Those days are the worst. Those days, having a rare disease overwhelms me and the anger comes pouring out, and sometimes to my own embarrassment, gets directed at you, the person standing by me.

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For this, I will never be able to apologize enough. Please know that I am never angry at you. I am angry at the situation and often, my inability to keep it all together. I am a perfectionist with a rare disease and that is not always a graceful combination. I always think that I should be able to handle everything seamlessly and when I can’t, it feels like a personal failure. None of this is to excuse my action, but to explain to you that I am aware of this flaw I have and reassure you that I work every day to not let having a rare disease turn me into a bitter person. Those of you who know me know that I am not easily angered person, but sometimes, as with all of us, we have our moments.

I recognize that you are not just standing by me, but with me. You are fighting with me and know that I could not fight this fight without you. You are the reason I fight it with such vigor every day. Whether you are one of my fellow rare disease fighter or my unaffected friends and family, you are my strength.

Thank you for understanding when I cannot be there, even if it is a special moment for you. It breaks my heart not to be there with you but I am always there in spirit.

Thank you for adjusting the plans to accommodate me, whether it is where we go or how long we stay. I am so amazed to have someone in my life that helps me feel included.

Thank you for staying with me while I am sick and in pain, even if you cannot do anything to make it go away. It is OK if you cannot think of anything to say. It is hard enough to be in pain, especially to have to go through it alone. Just you being there means the world to me.

Thank you for reminding me that tomorrow is a new day and that yesterday’s pain will fade.

Thank you for making me laugh and smile, when all I feel like doing is crying. Your words of reassurance and positive spirit are priceless.

Thank you for never making me feel like the burden that my illness tries to convince me I am. I struggle every day to keep my confidence up. I often overcompensate, trying to prove to myself that I am independent, that I do not need anybody – but we all know that is not true. You remind me that we all need help sometimes.

Thank you for not treating me like a patient, but like a person. The truth is, I do need you. Not in the sense that I need you to take care of me, but just to remind me why I work so hard to take care of myself and for the emotional support.

And most importantly, thank you for staying. Despite the endless hospitalizations and medical treatments, the burst of anger and moods swings, the overanalyzing or incessant planning, you chose to stay when a lot of people left. I cannot promise that the it will always be easy to live a life with me, but what I can say is that I recognize your support. I will always try to ensure our moments of happiness, laughter and joy outweigh the negativity. I promise  I will always fight anything that tries to tear us down. And please, always know that you are the primary reason my fight against my rare disease has been a successful one.

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The Irony of Being Too Busy With Medical Needs to Discuss the Healthcare Bill

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My wife, Melissa, brought up an interesting piece of irony to me last night.

Having a daughter with a newly discovered genetic disorder, we had numerous friends in our rare disease community calling their legislators all day yesterday to discuss the House healthcare bill. Ordinarily, we would have been a part of that group. Instead, our day was spent like this:

Our daughter, Adair, woke up and there was something that just seemed off, so Mel tested her blood sugar. It was 56, which is not good. We got fast-acting sugars into her to bring it up rapidly. One of the major risks of low blood sugar is having a seizure, which is a fairly serious consequence of managing her hypoglycemia.

Adair is having major hip surgery on Monday, so it was all hands on deck because of this blood sugar incident. We were on the phone with the endocrinologist on-call at the hospital before office hours. We spoke with Adair’s normal endocrinologist during regular hours. We spoke with urology. We spoke with the special needs clinic. We spoke with the pre-op staff…all because of low blood sugar and surgery.

We spent a ton of time trying to get a brief dental exam scheduled during her surgery as well. When your special child goes under general anesthesia, you try to schedule as many things as is safe. We already have ENT scheduled to come in and redo her ear tubes. After many phone calls and texts were made, we are still unsure if it will happen. Thankfully, a dear friend is working on it!

We spent a boatload of time talking to Special Needs about having something called a care conference. We want to get cardiology, endocrinology, genetics, dental, infectious disease, urology and ENT all in a room together to discuss Adair. Her genetic disorder creates a bunch of complications with how these disciplines interact…and so does her hypoglycemia…and so do a few of her other complications.

We are also trying to mentally manage the fact that our daughter is having her 13th surgery in two and a half years. She almost died during her last open heart surgery a few months ago, so this one is especially weighing on our hearts and minds. That, coupled with the fact that she will be in a cast from her armpits to her ankles for six to eight weeks post-op, is a mental and physical burden which is sometimes difficult to bear.

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The day was just so incredibly ironic. There was this vote that dramatically impacts our lives if it ultimately becomes law, and we didn’t have a moment in our day to contact our legislators about it due to Adair’s special needs. This is what it’s sometimes like having a special family member or being a person with special needs. Their immediate needs often take precedence, and all other aspects of life get put on hold.

We are some of the fortunate ones too. My wife is able to stay home with Adair, and my job is flexible enough that I can help on days like yesterday. But what happens to the families that don’t have that flexibility?

My wife and I are very thankful that no matter what happens here, though, God made a way for us to be with him in perfect harmony in heaven. Faith in that fact is what gets us through.

parents holding their young daughter outside

Some days are tough. Yesterday was one of those days. Adair’s surgery day will be another one of those days. The subsequent six to eight weeks of a spica cast will have some of those tough days, but our savior is with us every step of the way. He knows what we are going through, and I’m so thankful for that.

God bless you all for reading this, and special blessings to all of you other extra special families!

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When Battling Rare Disease Is Like Climbing a Mountain

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Imagine you have gone through every test known to man, plus some.
Well this has happened to me in the past 13 years. I thought I had a diagnosis, then I was told the doctors had changed their minds, so I spent 17 days in the hospital with some of the best brains in the land and at the end of that there was no definitive diagnosis, just more medication.

Then add to that the complete loss of your voice for three months – not a word, not a syllable, frustration growing ever deeper communicating through a synthesized voice on your smart phone.

Then your eyesight is affected badly. You wonder to yourself, what next? Then it hits and hits hard: depression.

We expect so much from our clinicians but sometimes they are stumped. I have decided to call my condition the “Napier syndrome” – that makes me more than one in a million.

You have a choice: you can go to bed, pull the covers over your head and never get up again, or you can decide to climb the mountain. Yes, it is very steep and the oxygen level gets lower as you climb ever higher, but on you go, climbing higher and higher. Every day you know you will never reach the summit but you still keep pressing on regardless.

This is a lonely journey but for one: the one who cares for you 24/7, the one who endures your moods and your anger and keeps coming back for more – in my case, it’s my amazing wife.

I know I will never reach the summit, but I also know I will never stop trying. Living with a disability changes everything: the extra medical costs (I find this amusing – you have the condition but you also pay for the privilege of having it), your friends stop visiting you, you may begin to become isolated, you may begin to lose hope… But then you remember you have been here before many times – too many to count – but although you’ve never reached the summit, you never gave up – you just kept climbing.

That is what it is like when you have a condition no one else has. Don’t ever dis my ability, because my abilities far exceed my disability and that plus my faith is what defines me. That’s what drives me to see others in a similar situation, give them all the help they need to lead productive lives and, when possible, join them on the climb to the top of the mountain.

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What the Rare Disease Community Means to Me

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My husband and I found out we were expecting our first child in March of 2012. We were surprised and shocked and so excited. During those nine months of waiting for our son to be born, we also squeezed in a wedding and a brief honeymoon. It was such an exciting time in our lives and a complete whirlwind. The thought that anything could be wrong with my unborn child never even crossed my mind.

We planned on breastfeeding, only having natural baby products, definitely no co-sleeping, and a minimal amount of wooden toys. Oh man, were we naive. So, so naive!

Silas was born on a sunny day in November. It was a fast and uncomplicated birth that had topped off my totally normal and healthy pregnancy. We had so many warm and cuddly snuggles with our sweet baby boy. Things were perfect! I think at this point many of you might know what’s coming next, the feeling that creeps in as you start to notice or hear things that make you feel a little unsettled. The not-super-obvious red flags that lead you down the road to endless doctors’ appointments, therapies and many tears.

Silas had trouble regulating his body temperature in the hospital and had failed his newborn hearing test three times. We stayed in the hospital for one extra day, until they felt comfortable with his body temperature. He refused to breastfeed, and I felt like a failure as a mom. I had every friend around telling me about lactation consultants and squeezing boobs like hamburgers and “You have to try these cookies, they will solve all of your problems.” Alas, he never got it down and we went to formula. We had sleepless nights, missed milestones, extra amounts of spit-up, and lots of co-sleeping (it’s amazing what you’ll do to get an hour of sleep).

It took hundreds of appointments and three years for us to get a diagnosis. We heard from every specialist that they had no idea what wrong, but they suspected something rare. Towards the end, our geneticist ordered a whole-exome sequence. She gave us a results wait time of four months and a 25 percent chance of getting a diagnosis (in other words, don’t hold your breath). If nothing came of it, she was throwing in the towel and referring us to the NIH. Four months later, we received a magical phone call — he had a diagnosis! We went in for our appointment and she explained that he has ADNP syndrome, and that there were only 13 other people in the world with this diagnosis and exactly three publications. The only thing we learned from that appointment was a name of a diagnosis and nothing new. No prognosis, no “what to expect,” nothing. We were still, essentially, alone. We then found a Facebook group for parents with children with ADNP syndrome, and my life was changed!

It turns out that Silas was actually the 33rd patient diagnosed. We scoured every post and picture. These kids looked just like Silas and had almost all of the same characteristics. My husband and I were up for hours reading; we felt so much instant camaraderie. We knew right away that we had found a new family, our tribe.

Over the last one and half years, since receiving the diagnosis, we have become actively involved in the rare disease community. We now have 105 patients worldwide in our ADNP community. We have started a foundation for research (ADNP Kids Research Foundation). Many of us have attended rare disease conferences. In September of 2016, five other ADNP mothers and I went to the Global Genes Summit in California. It’s a three-day conference for rare disease patients and patient advocates. We walked in this conference not knowing what to expect and found a home. We were surrounded with hundreds of people who knew exactly what we were going through. I was so amazed and how open people were, how willing and eager to share all they knew with us.

We knew we wanted to start a foundation for research. With such a small patient populations and minimal research out there currently, it’s hard to get funding. We reached out to established foundation members and the staff at Global Genes, the Everylife Foundation, and Rare Disease Legislative Advocates (RDLA). Everyone was so happy to share what they knew with us to make our journey easier. The common phrase we hear around the community is “Why reinvent the wheel if you don’t have to.” We are so thankful we didn’t have to reinvent anything. We have been able to lean on and get support from so many other rare disease advocates.

This community has been like nothing I’ve ever known. It has transformed the way I interact with people in my life. It has inspired me to fight and advocate for not only my child, but all rare disease patients. I have been given a voice and intend to do everything I can to shine a light on rare diseases. I feel honored every day to serve this cause alongside so many selfless and passionate people.

The rare disease community has given me light where there was darkness and grief. Hope where there was despair. Knowledge where there was confusion and loss. Courage and a voice where there was silence and fear. But most importantly, a big giant family where there was no one. I am forever grateful for this community and their love.

Visit ADNP Kids here.

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Caregiver Self-Care, Not Just One More Thing on the List

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Last month we had 28 medical appointments in our calendar. That does not include the IEP and meetings for updated medical accommodations at the school, nor the medical care for the dog who urgently needed dental surgery.

I am, after the loss of my former husband a few years ago, a single and only parent; the sole source of income for our family. A mom and a caregiver to two kids (9 and 10) who have have medically complex, rare illnesses. The situation is made a bit more challenging because there are no known cures; their illnesses are unrelated and have demanded a great deal of care the past few years.

Before my kids’ illnesses, I enjoyed training for half marathons on wooded trails, hosting dinner parties, sweating in Crossfit, meditating quietly in the early morning, hiking or doing yoga with friends and trying new paleo recipes. I was for the most part, fairly healthy.

Like many caregivers of children with complex illnesses, I found myself short on time, short on money, and slowly but surely losing opportunities for working-out, seeing friends and preparing nutritious meals for myself. My time was devoted to getting my kids to clinical trials and medical appointments. I tried my best to hold anchors of childhood normalcy by making sure they got to school and had play-dates as their health permitted, while still accommodating their nutritional needs. And by reducing how much I slept, I was able continue to work full-time.

I know self-care matters. I know it matters as much as administering medications, researching clinical trials and ensuring the magic of childhood is not lost to my children.

Research and experience shows caregivers have elevated rates of  certain illnesses, increased rates of depression and are at risk for substance abuse, insomnia and weight gain. Like many caregivers of medically complex and chronically ill children, I can anticipate being a hands-on caregiver for at least another decade. The cause of my stress can be measured in years, not weeks. And like many caregivers, after two years of what felt like non-stop care-giving activities — clinical trials, weekly medical appointments, in-patient stays, lengthy procedures, missed school and work, a future uncertain with the progression of rare pediatric diseases — I found myself needing to take inventory of how I was going to take care of myself in what had become my new normal.

Medical appointments replaced lunches spent at the gym. PubMed research replaced meals with friends. Eating an apple with almond butter replaced trying new recipes using the contents of my farm box. Updating notes in the kids’ electronic health records replaced morning meditations during quiet sunrises.

I work in healthcare. I know the importance of mitigating the stress of being a caregiver through evidence-based practices that include social connections, movement, healthy nutrition and mindfulness. For me, and many others, research shows spiritual practices and/or faith can also play a role in successfully managing stress.

We have a giant calendar that charts our family’s month. Now, along with the medical appointments, prescription pick-ups, reminders about physical therapy, work travel and client meetings, there are also notations holding time for my self-care: swimming, a hike with a friend, extra sleep, a visit to the gym, time to meditate or a new recipe to try.

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