Chad is an incredible dad and superhero caregiver who donated part of his liver to his infant son. He tells us his story of learning to navigate doctors and insurance companies to get his son the best care possible.
We’re back from our summer blog break, and excited to bring you the inspiring story of our third superhero caregiver. Cindy has 5 kids, ranging in age from 8 to 19, and is a practicing physician. Her oldest, Marcus, was diagnosed with autism when he was a toddler. Since then, Cindy has become an expert at helping Marcus fit in with his peers and live as normal a life as possible. Today, she’s sharing her story with us, including tips and tricks to help parents who are just getting started on the autism parent journey.
N: Cindy, thanks for making the time for this! You’ve had a truly incredible experience working with Marcus for the past 19 years, and I think there’s a lot that parents starting out on the journey can learn from your story.
C: Of course. You know, I think with autism, the most important thing is managing the behavior – really trying to help shape a child’s behavior and make it more typical, so that they can fit in. The problem with autism is that what is cute or acceptable when you’re 5 years old is not acceptable later in life. You really are trying to encourage your child to fit in as much as possible. You don’t have time to sit around and see if it’s going to go away. You have to take the bull by the horns and get after it.
On behavior programs, and where to start
N: I know that you have many success stories from the behavior program that you’ve worked on with Marcus, and I’d love to hear a bit about that…but first, how do you know where to start?
C: I realized when he was young that I needed to prioritize basic life skills first. Like using a knife! I decided when he was 5 that he needed to learn to do it himself. We started with breakfast sausage and a butter knife – you can’t kill yourself with that! But he needed to learn how.
It depends on the skill, though. Marcus couldn’t tie shoes, at all, for the longest time. I couldn’t waste precious time on a skill that wasn’t really important – there are slip-on shoes! He was 6’3’ and size 15 before he learned how to tie shoes. We learned it because Dan, the swim coach, called me one day and said, “Marcus is going to North [High School], and he’s going to be on the swim team!” So we had him go to practice, and when he got out of the pool, he put on his shoes, and then he looked at Dan and said, “Tie.” It was the funniest thing – Dan had been working with Marcus for years. We went home that night and worked on tying his shoes.
For all of these skills, you really need to understand the behavioral technique. I mastered it when he was 7 or 8 years old. You need to be so consistent, so that your kid realizes that you mean what you say. Marcus absolutely trusts me, and now the reward is just a smile or a “good job”. He rarely needs a reward because he knows that he’s doing the right things after so much practice.
N: It’s all about the process.
C: Yes. He doesn’t even really need a behavior program right now, but there have been several times in the past year when his special ed teacher has told me that he’s been reading out loud in class, and it’s disruptive. I told the teacher that we would have it fixed by tomorrow. Then, Marcus and I sat down at the table, and we got out The Cat in the Hat, and he read it out loud. I told him to read the book in his head, but he didn’t understand what that meant. So, I held his lips together, and told him to read it. He understood that he would have to read it silently.
When he went back to school the next day, the teacher did the same thing with him once, and then he had it down – cured. That’s the behavioral technique.
We’ve done the same thing when his teacher called and said he was talking to himself during class and repeating things. We worked on the signal for being quiet – purse your lips, and put your finger up to them. Then, when the teacher was at the board, with chalk, he didn’t even have to turn around when Marcus was making noise. He just put his hand up to his mouth and pursed his lips, and Marcus would stop. The other aides thought it was magic!
The other funny thing is that these techniques work with normal kids too! If you give in every time your kid wants something, they won’t understand no. I still have a great relationship with Marcus – when he’s tired at school sometimes, he’ll say “I love Mommy”. I know he loves me, but he also trusts me. He knows that I mean what I tell him.
Every child, regardless of their level, is going to benefit from a behavior program. It has to be a real partnership between the parents and the educators who support them.
On working with schools
N: How has your experience been working with the schools, and how do you get the most out of it?
C: For me, I have a strong personality, so it’s been a little easier! (Laughs) But for anyone, the key is that nobody is going to know your child better than you do – even if you’re a working mother, you’re there in the evenings, weekends, you get them up in the morning. Because you know them, you have to figure out what’s going to work, and you need to tell the teachers – don’t be afraid to go to the school and tell them what works at home! They love that, and then you can get to the next level together. The schools want to help your kid, but they need some help from you to do it.
When Marcus was in 3rd grade, the class started doing two-digit multiplication. His teacher called me and told me about all of these methods: the lattice method, the estimation method…there were so many of them. I said you know what, I’ve been working on this with him, and we have our own method. I developed my own terminology and was consistent using it at home, and then they used that consistent language with Marcus in school. That’s the only way he would be able to learn it – you have to be consistent.
On consistency and family life
N: How do you maintain the consistency yourself? Obviously you have good and bad days, and it seems like it would be hard to carry on with the consistency without a break.
C: Honestly, I think you have to be good at ignoring. You have to ignore the bad, and encourage the good.
One of the things that’s really helpful is for parents to figure out: what are three things that your kids really love? There’s something that they’ll go to the ends of the Earth for…hugs, skittles, goldfish, whatever. Then, when they do something good, you reward them with the good stuff. And they don’t get it (the reward) when they have problematic behaviors. You keep it simple.
N: How do you ensure that Marcus is receiving consistent signals in a household with 4 other kids?
C: Having the siblings around is good and bad. You’d be amazed by how young kids are so innocent and willing to help – if you set the tone that this is our kid, he is part of our family, and this is what we’re doing, they can actually become the best models for him. The more normalcy Marcus is around, the better – it almost dilutes the autism a bit. He’s just one more kid in this family.
N: How has all of this affected your other kids?
C: I really do think Marcus has taught them just as much as they have taught him. If there’s ever a kid in the classroom who’s slower, or has just moved in, they pick my younger kids to sit next to them. They just have the patience, and they’ve been exposed to the idea that there are differences in abilities and it’s okay.
Lessons learned, and looking forward
N: How are things changing now that Marcus is getting older and becoming an adult?
C: Marcus has great work ethic, so he tends to have a place with everybody – he’s well liked. He also doesn’t talk too much, so he’s easy to be around. We’re looking to move him into an independent apartment when he’s 21.
N: What have you learned through this experience of raising Marcus?
C: You realize that although there are a lot of bad people in the world, but if you look hard enough, you’ll find a lot of good people. Piano teachers, swim coaches, camping buddies. One of our friends even came with us to a gala to help us out with the kids. There are a lot of good people out there who have helped us along the way. You wonder why they do, but they’re just good people.
It’s funny, when you start out with the diagnosis, you can feel like you’re on your own. But you’re not alone! 1 in every 68 kids has autism. If you look up the street, you’ll find someone else who is affected – your neighbor, your friend, your nephew, someone. If you look, you’ll find people who get you.
The other thing that you have to keep in mind as a parent with a disability is that there is always someone out there who is worse off than you, and there is always someone out there who is better off than you. I’ve found myself feeling envious of a mom whose kid was less disabled than mine – but I also know moms who have it worse. You just have to make the best of it!
We picked activities that he can do. He can ski and do individual sports – so we all ski! Camping is another one. I never imagined in a zillion years that I would be a camper, but Marcus could do camping. Those are two major activities that we now all do as a family, because we followed his lead – and it’s good for all of us. And Marc loves it because it’s something that he can do with Marcus when he’s older.
N: Are there any other words of wisdom that you’d like to share?
C: When your child is diagnosed with autism, you want to try behavior things first – it’s the most consistent thing, and it’s proven to work. Parents often go to medications too quickly, because they’re looking for a magic pill. The medications are fine, and they can help, but there’s no quick fix. You have to be in it to win it, for the long haul.
Having a behavior plan can be hard sometimes, but not having one is harder. What would I do right now, when he’s 190 pounds of muscle and 6’4”, if I didn’t have a behavior plan? You have to keep in mind that your little one is going to be an adult in 15 years, and you have to help him to be a functioning adult just like you would with any of the other kids.
Honestly, Rachel was saying last week, he’s not disabled, he has superpowers! He’s less annoying and moody than everyone else – it’s really unconditional love.
Our second superhero caregiver is Mercedes, another member of our Folia family. Mercedes is married to Dan, Folia’s Lead Developer, and together they have two children, ages 2 and 5. Their oldest, Mila, has Down Syndrome, and Mercedes has spent the past five years becoming an expert in helping her daughter to meet and exceed all expectations set for her.
N: Mercedes, thanks for taking the time today to share your story. It’s helpful for parents like you take the time, so that others understand that they’re not alone in their experience of being parent caregivers.
M: I think you’re right, and it’s so important. You think you’re on the journey all by yourself, or with the medical stuff, that you’re a unique case, and it’s unsettling. But something that your mom said was very right…when you think there’s something wrong, there’s usually something wrong. You don’t realize how much the mother’s instinct has to do with how you take care of your kids until you have a problem, and then you just know!
On top of that, though, I think it’s very important to get knowledgeable about the condition that your child has. Specifically for Down Syndrome, there’s a lot of information out there, and doctors don’t always know it’s there. It’s hard for parents because your first point of contact is the medical person, and the information that they give you is very dated…there’s a lack of awareness in the medical space regarding the progress that’s been made with these types of diagnoses.
N: Why do you think that is?
M: With Down Syndrome and autism, things are constantly changing, so it’s easy to get outdated.
There are some programs out there to help, though. Operation House Call is a program that allows medical students to come to your house and experience what it’s like to live with a child with Down Syndrome. It’s a great idea, because there are a lot of medical pieces that come along with Down Syndrome, like the heart problems, the GI tract problems, the sleep apnea, but most kids don’t experience everything that is medically registered. Seeing the full list of things that could happen can be very scary for parents. Doctors tend to think about it in one bucket, so they’ll tell you about everything, but you may have a different variation. You can read about it, but quite frankly, you’re not going to have every medical concern that is written about.
N: So you’re saying that it’s actually less frightening than it seems.
M: Yes – and that’s part of what I was saying, you definitely want to get knowledgeable about the medical stuff, but you also need to talk with the parents who are experiencing it, because that’s where you find reality. And we need to bring that reality back to the medical field, so they can understand how happy and normal a life that a child like Mila can have.
N: How do you connect with other parents, to find that reality?
M: We’ve been able to connect with people in ways that were impossible before. Like Facebook – not only in Massachusetts, but across the globe, we all talk about things that affect our children on Facebook. This includes not only their medical and behavioral, but also how well they’re doing, the little things that are different. Sometimes you can feel connected and still alone, because you don’t get deep in conversations online…but it can help you feel more understood.
N: Outside of social media, what are some of the best resources that you’ve used to get information and connect with other parents?
M: I still think that the best resource to-date is word of mouth, believe it or not. It’s because there’s so much information, it’s not organized, and it’s distributed in so many ways…so it’s hard to consume. Oftentimes, when I hear about an experience that another person had, it’s much easier to digest and it’s real. You understand the pros and cons of a program or therapy even better from someone who is talking to you directly.
I wish there were one place to go to where you could find everything, medical and therapeutic, what works and doesn’t work. It’s just hard, though, because there’s so much out there – there’s a wide range of conditions even within Down Syndrome that make it hard for everyone to fit in one bucket.
N: You’ve done an amazing job with Mila so far – she has a very normal life, and even plays piano! What advice do you have for other parents who are dealing with a similar situation, and want their kids to be rock-stars, too?
M: We’re very lucky to live in a place with great medical resources, like Boston Children’s Hospital, which has a Down Syndrome clinic that helps to connect parents to resources and medical support, even support with the schools. They can write up a letter and give you the options that are available to you, and then you can hand it off to schools. The hospital’s program has made a very big impact on the community in general.
N: How about support from the schools themselves?
M: I think that’s something that has changed over time, due to parents pushing for inclusion, and organizations supporting them. I do think the movement has come from parents who wanted their kids to be part of typical schools and share the experiences that other kids have on the same playing field.
It’s made a significant difference in her life. We did a lot of one-on-one therapies with Mila growing up that helped her develop in ways that were incredible, but there’s nothing like being part of a community and knowing how to interact with other children, how to compete with her peers, how to be with other kids.
A basic example – I was teaching Mila to swim for three years, and the biggest struggle was getting Mila to put her face under water. You have no idea how many times I tried it…but we went on vacation, and she saw two little girls doing it. And here I was, three years in the making, and I couldn’t for the life of me get her to do it. But then she saw another kid doing it, and suddenly putting your head under the water is the easiest thing to do, the most fun thing to do. It just goes to show you that being part of a group is so important …you can’t measure that, and you can’t work on those things, they’re just part of human nature.
N: I think that’s a great observation. When I was a teenager, teaching swimming lessons to small kids, we saw the same thing in our classes. There’s nothing like watching her peers to motivate a child to try something new.
Can you talk a little bit about your medical challenges with Mila?
M: Mila’s greatest medical challenge was her heart defect. She was born with what was called Complete Atrioventricular Canal Defect (I don’t even know why I remember the complete medical term, but I do. You learn the medical terms quickly.) It was the most difficult thing for us to overcome, even more than the diagnosis. It helped us to get over the Down Syndrome diagnosis much quicker, because her life was on the line.
It was a very interesting time in our life, but the cardiac department at Children’s Hospital was amazing – they gave us a lot of information. For example, I had no idea that the reason that she was exhausted after 5 min of breastfeeding was because her heart condition caused trouble breathing. Her lips would even turn purple… it was very scary.
Even though the staff will tell you about it, though, you have to figure out what to do. We did want to keep breastfeeding, even before surgery, because we wanted to give her the opportunity to get the best food. It was trial and error – there’s really no recipe for that. We just created a balance of what worked and didn’t work.
So I would say yes, the medical staff and hospital were great, the lactation consultants were great to provide info, but you alone have to figure out what works best. I actually downloaded an app specifically for this. Mila needed to be on Lasix, so the water would flow through her body quicker, so we would time how much she was feeding, when the Lasix was given, and then when she would breastfeed again. We kept that log of info with both breastfeeding and diaper changing, so we could understand how she was doing throughout the day. You are the master of what works for your child – because not everyone will react the same way.
I really do think that the parent knows what’s best, all the time.
N: I love the log! You’ve managed this like a true consultant.
M: (Laughing) That’s all I know! That’s the only way I can get organized and get stuff done. If I have a plan and know that I’m doing everything for her, that’s the only way to feel okay. I’ve saved some of these Excel sheets that I use to track everything, and one day it’ll be a fun story to tell her. We built this together.
N: What advice do you have for other parents just starting out?
M: I think the biggest thing is to have high expectations, no matter what. Any child that is put in a rich environment will overcome many challenges that you didn’t think were possible. If you don’t push your kids to do their best, they just won’t! I think that’s worked for Mila. She’s done a lot of hard work, but we’ve always had expectations that align to what we think her potential is. And maybe even more! She’s surprised us in many ways – now she is playing piano, reading, learning two languages!
The other thing I would say is don’t worry too much about the future. I constantly used to do that, and never let that go at the beginning. And the more I see her grow and develop, I wonder what I was worried about. I was worried that she would have a hard time making friends, that she wouldn’t go to camp…I was even worried, would she ever get married? It sounds ridiculous, but you’re worried about things, and it’s just a waste of time. I now focus on the things that we can do today for her, and celebrating her successes, and helping her toward her goals. That’s what we can do now! Who knows what the future will look like – it’ll probably be a million times better than what you expected! You just have to let it happen.
Today we’re publishing the first in our superhero caregiver series of posts, featuring fearless parents who have learned to take charge of their children’s chronic disease care. This first post is particularly special to our team as it features Nell’s mom, Helen.
Helen and her husband, Paul, have seven kids, several of whom have chronic conditions. Their oldest son, Paul, has Common Variable Immune Deficiency, a condition that makes it difficult for him to fight off infections on his own. This interview will focus on Helen's experience learning to navigate the care for Paul's condition.
This interview has been lightly edited for clarity, and a few names have been altered to preserve privacy.
N: Hey Mom – thanks for doing this interview, and being the star of our first blog post! The point of the blog is to share stories, to bring together parents who have experienced the roller-coaster of caring for a child with complex needs. It’s easy to feel alone in this.
H: Yes, it’s isolating. And it can be frightening when you have medical experts in the community say to you that this is unusual, that you’re unlucky…but you know you’re not just unlucky. It’s also frustrating. Sometimes, you take your child in with ambiguous complaints, and they can’t explain it. You get the impression that they think you’re crazy, or that nothing is going on. But you keep coming back because you know that there is something wrong.
Ultimately, after 23 years I can tell you that when I thought there was something wrong, there was always something wrong. The only time I had a regret was when I neglected to follow my own instincts.
N: When did that happen?
H: There was that night when I couldn’t hear Paul breathing, and someone told me that not hearing him means that he’s breathing well. An ENT had told me days before that (it’s crazy how you remember dates – it was December 19th) that he was alright and I should go back to sleep - his tonsils were not so big that they were blocking his breathing. On January 7th, another EMT told me that his throat was 95% blocked by his tonsils and adenoids. On January 8th, they were taking his tonsils out on an emergency basis.
N: Wow. Looking back, it's crazy to realize how that played out.
H: When you have a rare kid, things happen that they can’t anticipate, so you go with your gut. I would rather pay the ER fees and spend the time than miss something.
We’ve had some bad experiences, like the home care nurse who couldn’t do the needle stick properly. We did home care infusions three times, but two of the three times we had that nurse, so we stopped. For a lot of reasons it would have made sense to keep having it done at home – I had three little ones, it was better for him not to be exposed to infections in the hospital, there was bad weather – but at the end of the day you have to do what’s best for your kid. I had a very real sense that the nurse didn’t know what she was doing.
Even recently, when he was sick in college and we visited, we realized that he was hooked up to an IV that wasn’t running! You have to realize that medical professionals are human like everyone else, and sometimes you need to step in.
N: Despite experiences like this, though, I know that you’ve also had great care from providers. Can you talk a bit about that?
H: Our experience has been overwhelmingly positive. It’s because of Dr. V – he’s the David Ortiz of pediatrics. Absolute home-runs. The key is to have a great doctor who cares about your kids as if they were his own. And they need to be able to write! You’ll need them to be able to explain situations where you need insurance company approval for things, and secure those for you. Most importantly, he trusts parents’ instincts, and he communicates effectively with them.
Especially in pediatrics, there are some very wonderful, dedicated, caring people who will go above and beyond to take care of your child. The nurses at Children’s [Women’s and Children’s Hospital of Buffalo] – the ladies in the IVIG unit – were phenomenal. The reason that Paul is able to give himself infusions today is largely because those nurses were distracting him when they had to put the IV in. It wasn’t a terrible experience for him.
N: I know you’ve also had a lot of support outside of the medical community.
H: We’ve had some great school nurses, building administrators, and guidance counselors. There was Kim – she was amazing! She did everything that she had to do to keep him as healthy as possible, through some very difficult times. He must have had 6 or 7 procedures during that time. He was still leaving school every 3 weeks...we even had swine flu during that time! She pushed things through.
For college, we needed to know he was going to be safe. Dr. V wrote a letter to the Disability Accommodations Office saying this is who he is, this is what he needs…and we got what he needed. And in other cases, some people didn’t have this. Paul had a friend who had a chronic disease and struggled to get straightforward accommodations, because she didn’t have the same level of support.
N: What advice do you have for parents who are just starting out on their journey of caring for a child with chronic disease?
H: Learn everything that you can from reputable sources, ask questions, and document everything, even if it seems at the time that there’s no plausible connection. Ultimately, you will probably find out that there is something tying it in. It might be important for treatment down the road.
Don’t be intimidated! Ask questions….respectfully, but ask questions.
You also have to realize that medicine is practiced on a regional basis…still! For some things, the right specialty would depend on where you live. For example, surgery for atypical tuberculosis was handled in Buffalo by a general surgeon and the Head of Infectious Diseases. In Cincinnati, it was the ENT Department. This can have repercussions for treatment because there’s a different knowledge base, and even different techniques, especially for chronic conditions which are evolving. We had to drive all the way to Cincinnati to find out about Biaxin.
That’s why becoming a member of a national resource group, like JMF or IDF, is so helpful. Go to conferences, talk to other people, get information.
One other piece of advice – every time I went in to get IVIG, I had to reiterate Paul’s history. I eventually just wrote it up and handed it to them. One of the most important things you can do is have a canned summary of the child, their conditions, their medications, emergency actions if necessary – think an emergency response plan at school. You’ll use it in a variety of settings – daycare, school, any new care providers, etc.
N: What about insurance issues? You’ve become a bit of an expert!
H: If you have options for insurance, research which plan will give you the best possible coverage. If possible, identify the experience of other people with chronic conditions that use that company. If your insurance company provides a dedicated resource for people with chronic conditions, use that resource! Paul had a couple of different nurse liaisons, and that helps, because that way you’re not reinventing the wheel every time – there’s someone who knows your child and what they need. Figure out ahead of time what the hoops are that you need to jump through, and do it! Typically you have the option to get a second opinion – and definitely use that!
N: Is there anything else you want to talk about that I haven’t asked you about?
H: There are two things. If your child can be allowed to ignore his or her condition, to the extent possible, to have a normal life, you may have to squelch your natural reluctance to allow him or her to take certain risks, in order to have normal childhood experiences. You want to wrap them up in a sterile room, but you can’t. Hopefully in the future, you will have a child verging on adulthood who will become a normal, functioning member of society. You have to learn not to interfere. I fight that all the time, and I’m still fighting it.
Even 13 years ago, I couldn’t have believed that he would be where he is and would have done what he’s done. When he went to college, I was very worried that he was going to crash and burn. But he nailed it! I think a large part of that was because he never thought that he couldn’t.
The primary purpose of The Folia Blog is to share the inspiring stories of the parents and patients that we meet in the course of working on Folia. It's truly amazing how families can persevere, and even thrive, in the face of significant challenges - yet their efforts are often unsung. By sharing their stories, we hope to bring the community of parent caregivers closer together, to motivate, empower, and ultimately to drive better health outcomes for their children.
If you are a superhero caregiver, or would like to nominate one, please don't be shy! Rest assured that you're not tooting your own horn - by sharing your story, you are helping to advocate for the community of parents around the world who have had experiences like yours.
We look forward to hearing from you! Watch out for our first Superhero Caregiver profile in the next couple of weeks.