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Why We Need to Pass the ACE Kids Act for Medically Complex Children

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My daughter Caroline was born with a rare neurological condition known as alternating hemiplegia of childhood. Only 800 people worldwide have the condition, and just getting the diagnosis took years of travel to children’s hospitals across the country.

During the early years, when we didn’t have a name for what she was going through, Caroline would cry for hours. She was unable to eat and even the slightest change in her environment caused seizures and severe pain.

We paid out of our own pockets because private insurance wouldn’t cover hospitals outside our Tampa Bay area, much less pay for many of the recommended medications and therapies. And so traveling for our daughter’s very unique condition connected us to families all over the United States. In fact, there are millions of families who struggle to coordinate care for their children with complex conditions across many states, facilities, regulations, and payment systems.

In addition to seizures, Caroline needs a wheelchair, is developmentally delayed and has cerebral palsy. She has been hospitalized for a full spinal fusion, chronic pneumonia and seizures that are uncontrolled for up to 12 hours. Prior to Caroline’s long-awaited diagnosis, we had seen 29 different specialty care providers for care. I carried a huge notebook of her charts everywhere so I could readily produce explanations of her medical history.

But that was before we heard about the Chronic-Complex Clinic at St. Joseph’s Children’s Hospital and before we were approved for the Medicaid Medical Waiver Program. We never imagined needing a government program to help us with health care, but now we only wish we had this support sooner.

Today we visit one location where nearly all the specialists she needs are on the same floor. If she does need hospitalization, she can see the exact same doctor she sees regularly — I don’t need to pull out my giant notebook and provide a briefing. This familiarity is so comforting, but it’s also efficient, resulting in faster treatment, less time in the hospital and better outcomes for Caroline. And we know the results are similar for other clinic patients. Hospital admissions, emergency visits and the length of hospital stays have been cut in half thanks to the clinic’s focus on coordinated and integrated care.

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Now traveling less for Caroline’s care, we decided to take a different kind of trip to Washington, D.C. last summer to testify before Congress in support of the Advancing Care for Exceptional Kids Act — the ACE Kids Act.

The ACE Kids Act would do a lot of great things, but two of its pieces are particularly important to families like ours. First, it would enable implementation of coordinated care networks for children with complex medical conditions in Medicaid across the nation. Other families could put down their giant notebooks knowing care integration and coordination was being managed by a medical home of health care providers who are expert in the needs of children with medical complexity.

Second, it would help patients more easily cross state lines for care under the Medicaid program. Unfortunately, our current Medicaid system isn’t designed for patients who need to cross state lines for care. But when you have a child with a rare disease, travel is often necessary in order to get highly specialized care that is only available at precious few locations.

There is little time left for the ACE Kids Act to pass this year. Families of children with complex medical conditions need help now.

Please join me by signing this petition and asking Congress to pass the ACE Kids Act. Our kids can’t wait.

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To the Creators of 'Stranger Things,' From a Netflix Fan With Seizures

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I’m a lover of most of the TV shows you’ve made, Netflix. I’m a huge fan of “Between” and I totally wanted to watch your show that you put out this summer called “Stranger Things.” My family watched it, my friends watched it, everyone told me great things about it. It sounded so amazing… but there’s something I really need to tell you.

I have seizures that can be easily triggered by flashing lights, and your show “Stranger Things” had so many flashing lights I was unable to watch your show. But what’s worst is that I felt left out. Like I wasn’t in on something. I miss out on weird things as someone who is living with a progressive terminal rare disease and I would love to watch “Stranger Things.”

But I can’t risk a seizure for a TV show. In my world, the person I’m watching TV with will almost always say something to me when flashing lights come on a show so I can cover my eyes or turn away.

Netflix, it’s not just you who doesn’t even know they are overlooking people like me who want to watch your shows. It is so many other people. It’s in TV shows, music videos, movies and random events. It’s so hard to know that I cannot do something like others because I could have a seizure. And if that seizure happened to send me into status epilepticus which I’ve been in about nine times, three of those put me in a medical -induced coma on life support. And for one I was intubated after my airway collapsed in on itself.

What I want is simple… a warning. I want to be able to look at something and see, “There is about to be flashing lights,” or “This show could trigger seizures or migraines.” And most of all I want you to somehow say, “I’m sorry for the inconvenience.”

And a warning to you, Netflix, is that seizures triggered by flashing lights isn’t that rare. There are others like me. We don’t get to watch the show. We feel left out by the over-looked world we have to live in.

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I’m not mad at you. I love you, Netflix. I’m always up for Netflix! You do so much good and made hospital stays wonderfully easier and make me able to watch shows over and over again. But please don’t overlook the triggers of seizures or migraines or anything else. It’s hard enough.

I’m going to go watch “Gilmore Girls” on Netflix.

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When My Daughter With a Rare Disease Sees This Painting, I Want Her to Remember This

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A painting of Molly as a little girl with angel wings in her dress and a heart saying "Fight for flight, Molly won."
A painting of Molly.

I have just produced a portrait for a global rare disease art exhibition. My idea was to incorporate the angel wings / boxing glove torso I designed into it. It represents the fight for flight stress response Molly never had. Molly has had the rare life-threatening condition hypopituitarism with adrenal insufficiency since she was born. The simple fact was we could have lost her to it at any time. No one would have known a simple cortisol injection would have saved her.

I began by painting Molly’s face, remembering all of her little features and beautiful baby cheeks made all sorts of emotions start flying back. I felt regret, sadness and shock at the fact my baby girl could have died at any point in her first 14 years. I remembered the little dress she was wearing and the curls in her hair, which took me ages to detangle because Moll felt pain or discomfort much more than anyone.

What hit me the hardest was painting the actual tears in her eyes. For every tear she has ever cried, I feel I as though I am responsible. I had looked at this photo on the wall a million times. I’d never seen the tears before. Now I was actually painting them and I felt so so sad. My poor little girl, she had a growth hormone deficiency, poor thyroid function and very low cortisol. Had all of these things been discovered. Had she been medicated, those tears from feeling unwell so often would have been much much less.

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Molly thinks she is weak. She’s 17 now and gets so frustrated when she is in pain and feels so poorly. She has battled through all of primary school, never once giving up and losing the will to want to be at school. She  tried ballet with chronic asthma and joined the Brownie, always wanting to attend every gathering. She unicycled. And when she was well, she didn’t stop trying to do all of the things she wanted. Molly battled her way through feeling poorly, to the point when she would just collapse in a heap on her desk at school and go in to a deep sleep. This happened a lot. We never knew how ill molly was. She could be running about and suddenly she would stop. The teacher would phone, I’d take her to hospital and discover she had pneumonia.

I have lost count of the tests she’s been through. I used to say to people when the nurses were putting needles in her hands, “How does this make a small child feel? They don’t know or understand it is for their own good.” And there I was, appearing to my baby that I was letting them do this.

Molly fought against all the odds, she had no natural mechanisms inside her to make herself better. She just scrabbled through each time, nearly always ending up in hospital on iv antibiotics. The closest call was when she was 9 years old and had appendicitis. She had previously that month been tested for Addison’s disease. Although it was negative, she effectively did have Addison’s, just a different form. Her adrenal glands work, but her brain doesn’t send the signal for them to do so. During the assessment, the surgeon told Molly to jump up and down. Although the pain was immense, Molly did jump up and down because she is a fighter and will never be defeated. Then, the surgeon made a huge mistake. Because Molly jumped up and down she said, “Oh well, no one with an appendicitis can jump up and down — the pain would not let them.”

Molly was left on the ward, with no consideration for the potential deathly Addison’s complication and with the surgeon’s opinion that she was OK. Her appendix erupted in the early hours of the morning. I can only thank again her own body for cocooning her appendix in a massive wall of fat cells. This prevented the poisoning of all of her organs.

Molly was rushed to surgery. She was saved, I believe, because of the massive dose of steroids (cortisol) she was given because of her chronic asthma. (The protocol for anyone with adrenal insufficiency/Addison’s is to give cortisol cover in any operation. This prevents the body going into adrenal crises and death.)

Molly was ill for weeks after this. The surgeon said in his career he had never come across the body cocooning the burst organ in this way. protecting itself from serious peritonitis. She did have pockets of poison all over her body from the eruption but mainly it was contained in the cocoon. Molly was very poorly following the operation no one could make out why she was so ill. She even asked me why the doctors didn’t know what was wrong with her. She had adrenal insufficiency. She needed cortisol.

Finally, after loads of antibiotics she was discharged from hospital. Moll slept in a toddler bed with us in our room for the next four weeks. (She was tiny). She would hallucinate and be terrified of big spiders on the walls. They were not there. One night, she thought her hands were big, floppy, rubber hands. She was screaming at them and waving them about. It was terrifying for her. The doctors put it down to effects from the drugs and anesthetic, but we now know it was due to low cortisol. She was in grave danger, but again, we did not know.

Now, the angel wings in my painting take on a different meaning to me. I truly believe for 14 years, Molly was protected by something much bigger than we know. Although her angel is still there (I believe he is my brother), I feel like I’m taking over the protection in a real world sense. That must have been hard work for 14 years. I know it was this end.

So now when Moll looks at herself as being chronically ill, tired, weak and “no good,” I can show her this and say, “No, you are the strongest person I know. Your battle to live, to run, to jump, to eagerly learn everything you have has been 1,000 times harder than your average peer could ever imagine. You have defied all odds to be here. You are not weak, you are strong. You will always fight for your flight. And now we know everything we can help you do it.”

 

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My Life With Dysautonomia Began Long Before My Diagnosis

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My life with dysautonomia began long before my diagnosis. I have always referred to myself as klutzy. I’m the one who misses steps, slips easily and considers using bubble wrap when I travel too far out of my comfort zone.

While I’ve always been someone who carried a lot of extra weight, I’ve been that person who loves to participate in things like swimming, snorkeling, riding boats and jet skis and trying as many new experiences as I can.

But my friends will tell you that I’m also a geek before her time and love “Star Trek,” “Star Wars,” “Doctor Who,” “Firefly,” astronomy and astrology. But that life of learning also led me to be the first person in my family on either side to complete a masters degree and am currently pursuing a Ph.D.

But here’s where my dysautonomia story begins.

During the process of writing my dissertation, I began to lose the ability to remember facts, figures and relevant resources. Everyone, including my program chair, felt that I was overloaded. After all, I had just earned my MBA, was raising two teenage daughters and was working full-time as a supervisor at a busy call center with more than 15 direct reports. Even with the assistance of my husband and my wonderfully supportive family, I felt like I was falling apart.

I went to doctor after doctor and was told I was overweight but otherwise healthy. They said I just needed to work on my stress levels. I began to think that it was just an emotional break.

About a year later, I was tired of being tired and started to push for a diagnosis. One test suggested fibromyalgia.

But after five trips to the ER with chest pain and palpitations, I finally met a doctor who thought outside of the box. He did all of the appropriate chest and heart testing and provided a fantastically clean bill of health. But he also suggested a discussion of post orthostatic tachycardia syndrome (POTS) and dysautonomia.

Testing showed a strong positive for dysautonomia. And an answer to what was ailing me was finally achieved.

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My journey has just begun. Dealing with fibro, dysautonomia and sarcoidosis, along with foot and knee surgeries, I have had about nine months to focus on being a better me. I’m not there yet.

At 52, I’m a little old for a first diagnosis of dysautonomia. But I’ve gained so much hindsight!

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Image via Thinkstock Images

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What I Wish Others Understood About My Son's Special Needs

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My son is diagnosed on the autism spectrum, but it is quite common for people who are not around him often to state they would never know he has autism, or if they are aware, they’ll comment how amazingly he is doing, which is most definitely true. I realize I should probably be comforted by these comments, that I should focus on how far my child has come in the last few years, that I should recognize and appreciate the simple fact that my son is an exceptional little boy in so many ways. But sometimes it is frustrating for me as his mother, as the person who spends every single day and most of his waking hours with him, to feel the need to explain both myself and my child to pretty much everyone we know.

Without being in this world every day, without living each and every morning, afternoon and evening, without managing some of our day-to-day challenges or unique situations, I feel it is nearly impossible to explain certain traits or characteristics that impact my son, because many times the meltdowns or difficulties are the culmination of so many factors that other people don’t experience the same way.

There are traits and characteristics my son has that can be quite common for those on the autism spectrum; some of these have become less prevalent over time, yet many of these traits are simply a part of who he is, and we accept what he needs and how we must adjust accordingly in order to allow him to enjoy life and grow as a person. My child struggles with sensory processing and can become easily overwhelmed, especially during major changes in our schedules, routines and environment. This is most evident during the holiday seasons, when school schedules are reduced, long breaks from our normal routine occur and we are spending our time at family gatherings and parties or traveling more often away from home. Because my son is doing so well, has grown so much and continues to expand his capabilities in all areas, it can be easy to forget how challenging certain situations can be for him. Even my husband and I are guilty of this, because we often fail to recognize our daily lives are very structured and routine.

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Explaining sensory overload to even those closest to us is hard; as a mom, I still worry about what other people might think. I assume most people probably consider some of what we allow during holidays or vacations as simply “lazy” or “permissive” parenting — yet the truth is there are real reasons behind why we do what we do, why we make accommodations, and why my son may struggle in new and different environments. For someone like my son, noises can be unbearable, so the crowds and the sensory overload that often accompany family gatherings can be difficult.

Sometimes, he needs to have downtime; he needs to have a safe place to retreat to and regroup. This may entail an iPad movie or game with headphones, and it may look like he is ignoring everyone or being rude. He may not be able to sit at a family dinner; he can be picky about what he eats, so we pack food every time we leave the house. He requires physical activity and can have trouble if he is unable to get the type of input he needs to regulate his body. He thrives in structured environments, and the lack of structure that accompanies our holidays or down time can seem to be fine to outsiders for a day, but we often experience the impact of the lack of structure during the following day or days. He can participate and have fun in the majority of outings and experiences we do as a family, but it is not without its challenges for him. If we sleep out somewhere, have a different bedtime, do not have our normal routines, visit with a large number of people and experience many new or different venues or things, my son will usually go along with it and have a wonderful time — yet the next day or two can be more challenging than we have seen in a long time as a result.

I believe in seeing the good, in focusing on the positive and on appreciating the blessings in life. Just because I recognize my son’s challenges does not mean I am focusing on the negative. It also does not mean I am underestimating my son and what he is and will continue to be capable of achieving. He is a rock star, he is amazing, he continues to wow us daily, and we are truly proud of who he is. But being proud of who my son is also requires me, as his mom, to recognize when he needs a break, when we are pushing the limits, when we are setting both him and ourselves up for failure and distress.

I cannot make the world easy and perfect for my child; he needs to exist in the real world and deal with frustrations and difficulties as we all do, but I can be aware and respectful of what we can do to help him be his best self and to allow him to progress at his own pace. Not acknowledging these needs of my child, in my mind, is no different than expecting a 1-year-old to go without naps all day long because of family events or schedules; it is simply not realistic, usually results in tantrums and a lot of crying, and benefits no one.

So here is where we are today. Maybe we can say yes to one event, but no to another, because we recognize we need a break in between. Perhaps we can do one party, but not both. Maybe we let our child eat dinner alone with an iPad, because making sure he actually eats is more important to us than whether or not he is sitting with the rest of the family. Most likely my son won’t be dressed up for the holidays, because he is so sensitive to most clothing materials, shoes and fabrics that we gave up that fight a long time ago. It is evident to me my son has no need to apologize for who he is and what he needs, and that the pressure of being the type of parent I think is expected — or not wanting to let anyone down by saying no to an invitation, or having to leave early — is what can create the stress in our lives. It’s just I want so badly for those around us to truly understand.

My deepest wish would be that we did not feel the need to explain away what we need as individuals in order to be our best selves. That acceptance, and not just awareness, was truly prevalent. In my eyes, we are all doing the best we can, and I think that is pretty darn great.

Image via Thinkstock.

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Learning You Might Have Autism as an Adult

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young girl and her dog

All my life, I knew I was “different.” As a child, I was described as shy. I had “temper tantrums” frequently. I found it difficult to make friends, couldn’t make eye contact, found it hard to speak to others, and struggled with both social skills and communication skills — even confidence. I remember going through primary school with severe anxiety. As I went through each year, it became harder and harder to make friends. I remember feeling so different from my peers that I tried to change myself in order to be accepted. This didn’t stop the bullying, though. Eventually, as an 11-year-old, I was diagnosed with mental health difficulties due to self-harming. Ever since then, I have battled a string of mental health problems from anxiety and depression to anorexia nervosa. I let myself accept the reason I was so different was because of the difficulties associated with my mental illnesses.

That was until my mental health disability advisor turned to me one day during one of our meetings and mentioned the word “autism.” Of course, I had heard of autism. As a student who is training to be a special needs teacher, I have come across many children who have been diagnosed with autism. I have done academic research and even essays on the disorder. So when my disability advisor turned to me and mentioned the word in relation to myself, I paused for a second. In this stigmatized world, autism may be seen as something most often associated with children. Many of the children I had come across with autism faced challenges and most were nonverbal. Though I can struggle with some everyday tasks, I have always put this down to my mental health challenges.

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Despite my doubts, my disability advisor handed me an AQ-10, an autism-spectrum quotient questionnaire, to fill in. I scored 10 out of 10. An autism referral is strongly suggested when a person scores six or above. Once she had my consent, she registered me for a referral with an autism assessment charity, and the journey began. I realized most of the behaviors I had put down to my mental illnesses were pretty consistent with those associated with autism spectrum disorder. Although I communicate, I have some difficulty reading expressions or body language. Although I know you’re there, I cannot make eye contact. I am hyper-aware of my senses; I am either too stimulated or under-stimulated, which leads to repetitive movements known as stimming (rocking, hand-flapping, knee-bouncing). I like tactile objects and explore with my hands. I cannot deal with social gatherings or being outside of the house. I cannot ride public transport or leave the house effectively. People sometimes feel I am selfish or short-fused; I have meltdowns when I cannot deal with my emotions and struggle to understand when you are not OK. Time is a big thing for me. Routines and timetables are the center of my life. I cannot hold down a job, despite being able to do it. Though it may not appear to be so, I struggle every single day.

Autism is a broad spectrum. I have been told a diagnosis of autism is very likely, although I will not know completely until my assessment. However, I feel already I have learned so much about myself through this referral that I had never learned before. I feel as though autism explains my life, and I am not ashamed of that.

Having a diagnosis of autism does not limit the possibility of being something amazing. I may be different, but I am not less.

Images via Contributor.

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