Amy and her son

When My Child Is Developing at a Different Pace, I Remember This

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I’m a physical therapist. I value the scientific method. When working with my patients, I use objective measures and assessment tools to determine level of progress and the effect of my treatments. When a patient does not perform well on an assessment tool, I do not want them taking it personally — it is just one measure of function and does not define them as a person.

Given this background, why is it that I take it so personally when my 11.5-month-old does not meet milestones, or ends up in the gray and black zones of assessment tools? Why does it feel like a punch in the gut every time I hear about all the words someone else’s child says, when my almost-toddler, who used to have “ma” and “ba” sounds, only utters “ga” and “da” and often is silent? Why do I worry so much when my son, who has been crawling since he was 7 months old, loses control of his arms and face-plants into the floor? Why do I still cry when I cannot fill out assessments about his self-feeding because he still cannot tolerate any solid foods?

I worry because I know regardless of how tough this first year of parenting has been and all of the therapies he already had, there is still so much more work to be done. Even though it took months of heartache, labs, tests, therapies, doctors appointments and sleepless nights to get his diagnosis of mast cell activation syndrome (MCAS), there’s still a strong likelihood something else is at play. I worry because I feel like there’s reason to worry. I worry because I have given all of myself to him this past year, and I worry I will burn out and not be able to give as much as he needs and deserves in the coming years.

I love my son for who he is and value his personality, his sweet and playful nature and his strong independent spirit. But it has also been a tough first year, and I am well aware the tough times may not be over yet.

I am constantly reminding myself that in loving and accepting him, I must love and accept his pace.

He will do things on his own time.

He will need more therapies, more treatments, more assessments and more assistance than some other kids, but I have to trust that he will get there, that he will say “mama,” and I’m sure one day I will not be able to get him to stop talking.

And while I am on this ride with him, working endlessly to give him the tools he needs to be a social child and eventually a successful adult, I challenge myself to stop worrying and instead celebrate.

My son will be 1 year old next week. He has accomplished so much, and has become such an incredible person already. He crawls everywhere. When his arms give out and he falls and hurts his face on the ground, he does not let that stop him. He just keeps on crawling! He is determined.

He takes his medicines four times a day with minimal fight, even though they are unflavored and taste terrible. He is so brave.

He loves his books. He feels pictures, turns pages, and refuses to take his bottle (no matter how hungry he is) until we read one more book (or two or three!). He is thirsty for knowledge.

He loves to play. This child will play and play and play, regardless of how bad his stomach is hurting, how much his rash itches and how much he just threw up five minutes ago. He will continue on playing, often without a pause. He is endlessly strong.

I choose to celebrate my son as we near his 1st birthday and every day. I choose to suspend my worry and to allow myself to simply enjoy my son for who he is. He deserves it, and I deserve it.

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The Reality of Becoming a 'Rare Disease Parent'

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This is my reality.

I’m coping with the fact that my child has a medically rare, chronic diagnosis: Mast Cell Activation syndrome (MCAS). I haven’t fully accepted it yet, but I’m getting there. I recently read a blog post about being a mother of a “special needs” child. I cried when I read it because I never thought of my child as “special needs,” but when I read the article, I realized it applied to me perfectly. I am a mother of a child with special needs. No quotation marks needed. My child does not “look sick.” I am often told: 1) how good he looks; 2) how he looks like he’s gaining weight; 3) how happy he seems.

My response?

1) Yes, he does look good. It takes a ton of effort to keep him looking this good. The majority of his symptoms are internal anyway, so even at his worst, he would probably still look pretty healthy.

2) Tell that to the scale. He’s not gaining weight right now, and your comments minimize my reality and the intense fear, sadness, helplessness and frustration I feel every time we go to the doctor’s office for a weight check and see his lack of weight gain.

3) He is happy

We are so lucky our child is generally happy, playful, relaxed, inquisitive, patient and engaged. But his disposition is often like that even when we know he’s uncomfortable, which hurts us. And when he’s really screaming and crying, we know the pain must be pretty bad. That hurts more.

This is my reality.

I’m coming to terms with the fact that my 10-month-old son is allergic to everything and anything — meaning he could react to triggers (food, environmental, etc.) with vomiting, rashes, abdominal pain, sleeplessness, restlessness and hyperactivity. And once he reacts to something, it can take weeks to start seeing improvements again. I’m nervous during play dates, and I’m terrified to take him to parks and public places. If I take him outside, I spend the entire time worrying about every possible trigger, so we just go back inside because it’s a lot less stressful. Any time I have someone over, I’m half-listening to their stories and half watching them like a hawk. (Yes, you just washed your hands. Thank you. But then you ate those pretzels. So yes, you need to wash your hands again before you touch my son or his toys. Yes, I’m serious. This is my son’s life. This is my life. Wash your hands again.)

This is my reality.

I often find myself comparing my child to other children with chronic health conditions. I look to other children and sometimes think “at least my child doesn’t have ‘XYZ.’” This mindset minimizes my own child’s condition, and dumps me back onto the denial train. It also makes me feel guilty for having sad feelings regarding my child or my situation. How can I feel bad about this when another parent is dealing with that? Not healthy, I know. I’m trying to find acceptance by looking to families with healthy children, and acknowledging my current experience is quite different. I’m pretty sure typical families do not take their child for weekly weight checks or scrutinize over every dirty diaper. I’m sure that it never crossed their minds that their child may have an allergic reaction to heat, and therefore maybe they should not go to the park that day. Very little of what we’re going through with our child is considered “normal.” I’m allowed to mourn the loss of my hopes and expectations for my experience as a first time mom. I’m allowed to compare. It’s all part of my process.

This is my reality.

Other parents are proud of their children for talking, walking and clapping. We are proud of those things too, when they occur, but we’re also really proud of how well he takes his medicine. My child, who is 10 months old, is just now starting to take his disgusting, compounded medicines without crying or spitting them out. Every time he takes his meds (which is four times a day), we throw a party, praising him profusely. “We are so proud of you! Way to go! What a big boy! What a trooper! Yay baby!” And this really pisses me off. He shouldn’t have to take his medicine like a big boy. He is a baby! And that compounded, no-dye, no-flavoring, no-preservative medicine tastes terrible. He has every right in the world to protest, scream, and spit. But he just takes it peacefully now. I’m proud of him, and simultaneously, it breaks my heart that this has become his new normal.

This is my reality.

My child was diagnosed with Failure to Thrive (FTT) at 4 months old. We calculate everything that goes into his mouth, to the 10th of an ounce. We feel anxious when he does not want to eat some days, and we celebrate each ounce he does eat. We take him to see a GI specialist every three to four weeks, and we take him to the GI’s office weekly for weight checks. We used to weigh him at home every night before bath time, but then stopped when we realized it was not helping anything, and it was not changing anything.

This is my reality.

I have the sweetest child, who is also my greatest educator. He teaches me patience like I never knew it was possible, and to be comfortable with uncertainty. We rarely feel confident in knowing what triggered a reaction. Sometimes it’s near impossible to tell whether he’s teething/fighting a virus/[insert normal baby thing here] or having a reaction to something. While I’m not at the point of being comfortable with these uncertainties yet, I’m learning to accept them, and I’m more familiar with them now. He teaches me to be strong, and to speak out. I have always been one who is eager to please, who does not rock the boat. By advocating for my son, I have found my voice and my strength to speak up, ask for services, demand answers and expect nothing less than the best for my child. My child is worth it. I am truly lucky to be his mommy, and I hope my struggles during this time will help eliminate or ease the struggles he will face as he gets older. My child came from me. He is a part of me. He is my reality.

This is my reality.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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How ‘Welcome to Holland’ Helped Me Travel With a Chronic Illness

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It had been a very long school year, and I was ready to get away. During that time, I was hospitalized twice during the fall semester and missed two other weeks for out-of-state travel for specialist appointments. In the spring, I went to the hospital less than two weeks into the semester, and it didn’t end there. Numerous emergency room trips, and eventually surgery, filled my calendar when it should’ve been filled with meetings with students, research projects and scheduling my dissertation proposal.

But the semester finally did end. My husband and I had been planning a cruise to Alaska for almost a year to celebrate my brother’s graduation from college. We were looking forward to a week away and taking a break from life. Then, a couple weeks before we left, my mom posed a question to me. I don’t remember the exact wording, but it was something along the lines of this:

“Are you ready to go on the cruise with mast cell activation syndrome (MCAS)?”

At first I was confused and wasn’t sure what she meant. Of course, I was ready. I had doctor’s notes stating I needed to carry medically necessary liquids through airport security and onto the ship. I had made list after list of supplies to make sure I didn’t forget anything essential. I had what we hoped would be more than enough epi-pens and emergency medications to manage any reactions. We had contacted the ship ahead of time to make sure they were capable of handling my extremely limited diet. Plus, we checked to make sure there was an extension cord in our cabin to charge my feeding pump. All the normal necessities like clothes, toiletries and, of course, cameras were ready to be packed. Why wouldn’t I be ready?

But when we got to the airport, what my mom asked me finally made sense. After an anaphylactic reaction on a plane two years earlier, my doctor decided I should pre-medicate prior to flying to hopefully prevent any reactions before they start. All my medications are liquids so I can put them down my feeding tube, which is no big deal at home. However, in the airport bathroom, it was much more complicated.

I stood in the bathroom and tried to balance my syringes and a cup of water on the edge of the sink. At the same time, I was trying to keep the end of my feeding tube from touching anything and getting contaminated with who knows what kind of bacteria and germs. It was so frustrating. I was on vacation. Things were supposed to be relaxing and fun, and I wanted to feel like I had gotten away from the craziness in our lives. I wasn’t supposed to dealing with my feeding tube medications in an airport bathroom while people stared at me as they washed their hands.

And that’s when I realized what my mom meant. She wasn’t asking if I was physically packed and ready to go, she was asking if I was ready to take my chronic illness with me on the trip. It wasn’t that I actually believed I would all of a sudden be healthy just because I was going on vacation, but there was a part of me that was perhaps subconsciously expecting things to be easier since I was on vacation. That moment in the airport bathroom made me realize that we may get breaks from our every day schedules and routines, but for those of us dealing with a chronic illness (or any special need), there’s no vacation from being sick.

It’s just like Emily Perl Kingsley’s essay, “Welcome to Holland,” where you plan a trip to Italy and end up in Holland instead. You step off the plane and feel out of sorts and upset that your trip isn’t what you had planned. But if you take a minute to look around, you realize that while Holland might not have the canals of Venice, the Sistine Chapel or the Leaning Tower of Pisa, it has a beauty of its own in the canals in Amsterdam, the countryside windmills and the colorful tulips. Holland might not be as flashy as Italy, but there’s still beauty in slowing down and taking in the sights.

And that’s what I learned on this cruise to Alaska. When I was young, our family vacations were always fast-paced and busy. This trip was different. I needed more down time to recover after one activity before moving on to the next. After a day of kayaking, I needed the evening to relax instead of going out again after dinner. After hiking a technical trail in the sun, I spent the next day just sitting out on the balcony, looking at the mountains and glaciers in Glacier Bay. Instead of staying up late each night to see the shows, I made sure to get a full night’s sleep so I could enjoy activities the next day.

Kylene Boka

Would this trip have been different if I weren’t sick? Yes. Was this trip fantastic in its own right, and did I have a great time? Absolutely! I would even say that being slowed down by my chronic illness gave my husband and me the chance to just enjoy being on vacation and not feel like we were rushing around to get to one activity after another. It might not have been the Italy that I was used to and was expecting, but I found Holland to be just as incredible with a beauty all on its own.

The Mighty is asking the following: Share a travel moment related to disability and/or disease that made you laugh, cry, roll your eyes or was otherwise unforgettable? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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How My Husband and I Made Our Trips to the ER More Romantic

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My husband and I got married on a windy, September afternoon in 2014. Three days later, we made our first ER run as a married couple. And so began the “date nights” that have been a consistent fixture in our calendar during our first 8 months of marriage.

I live with a chronic illness called Mast Cell Activation Syndrome (MCAS) which is a condition where my mast cells are hypersensitive and continually release chemical mediators throughout my body.

The symptoms are most severe in my GI tract where my mast cells are sensitive to any solid food that requires digestion. It can cause severe pain and motility issues.

We’ve tried to count how many times we have been to the ER in the 8 months we have been married. I think we ended up somewhere around 15-17, and that doesn’t count hospital admissions. We jokingly began referring to our ER trips as “date nights” after a particularly difficult week that resulted in two trips on back to back days.

Since we can’t go out to eat, because I can’t tolerate food, and we don’t go do other activities often, because a lot of times I feel sick or just don’t have the energy, for a while it seemed whenever we did go out in the evening it was to the ER.

Sometimes it’s hard to see our friends posting on Facebook about going out on date nights and doing fun things. Both my husband and I love to be active, and it can be difficult not to be able to do “normal” newlywed activities. Instead, we sit at home watching the next season of House because I’m not feeling well again.

Referring to our ER trips as “date nights” has become a joke for me and my husband to share. It helps take away the disappointment and frustration that comes with the ER visits and helps remove some of the negative emotions surrounding each episode. It helps us disconnect from the fear of dealing with a chronic condition. Plus, it makes it even more fun when we do get a real date.

Just a few weeks ago, we were able to go on a double date with friends of ours to a drive-in movie. As we were heading to meet our friends, we realized it was the first “real” date we had been on in a while. We got a laugh about it and quickly quieted our voices so we wouldn’t scare the good vibes away and spoil the evening.

Living with a chronic illness has its challenges. It can be hard and frustrating and difficult and disappointing. At the same time, though, we have learned to find something to smile about in everything and truly treasure the good moments I do get. While our date nights may not look the same as couples other couples’, every one is time spent with my husband, whether we are in the ER or at a drive-in movie.

We have learned to treasure even the hard times and make the most of the good times. Plus, when we do get a “real” date night, it’s that much more worthy of a celebratory Facebook post.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When My Son’s Barber Gave Us a Gift I Might Never Be Able to Repay

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If you are an autism parent, you might already know how difficult and utterly exhausting getting your child’s hair cut can be. My son, Michael’s, first cut was a horrible experience for both of us. After that first cut, we were both ruined for a while. I decided I would start cutting it myself. He still cried. It was still exhausting, and it still took the rest of the day for him to recuperate every single time.

Over time things got better with me cutting, but I am no barber. It always looked OK, but it definitely could have used professional help. One day driving through town, I noticed a barbershop I’d never seen before. I took my other son, David, first. I met Freddy. He did a really good job, and David was comfortable. I thought for a bit and decided I would take Michael. I expected to walk out in tears. When we got there, I explained that Michael has autism and really didn’t like cuts from anyone. Freddy talked to him. He joked with him and made him comfortable. I was in shock. We have always gone back. Michael actually asks to go back.

So when we decided we were going to move, it hit me. I would have to find a new barber for Michael. The thought turned my stomach. The level of trust he built with Freddy doesn’t come easily. Now we would have to start all over. Last time I got Michael’s hair cut, I jokingly (but seriously too) wrote on Facebook that if I had unlimited funds I would fly Freddy back and forth just to cut Michael’s hair. Freddy and I are friends on Facebook, and he saw that post.

Well, this weekend I went to get Michael’s hair cut. As we were getting ready to leave, Freddy asked when we were moving. I told him in the the beginning of July.

He said to me, “My wife and I talked. We will go down to Virginia before the school year starts so I can cut Michael’s hair.”

I thought I was hearing things. I must have looked like a deer in the headlights and I obviously thought that he was joking. As a matter of fact, I must have asked six or seven times if he was. He was not. He was serious. He also was not already planning to go to Virginia. The purpose of his trip, from New Jersey to Virginia, would be to cut Michael’s hair.

How do you thank someone for a gift like that? How do you make them understand just how much the gesture means? I still am not sure. Dinner? A gift certificate? A kidney, maybe?

For now, this post is my thanks to you, Freddy. You have no idea what this means to me… what it will mean to Michael. You have shown a level of kindness that I don’t know I could ever repay you for.

Both of those pictures were taken after Michael’s very first visit to Freddy’s.

autism and haircuts

A version of this post originally appeared on This Ausome Family.

The Mighty is asking the following: What’s one moment someone in your life performed an act of kindness for you or your loved one with a disability or disease? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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My Son Did a Great Job at Airport Security. But This Guard Did Not.

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My son, DC, loves to travel. He loves hotel rooms. He even loves to fly.

DC has flown quite a bit, but this will be his longest flight so far. Security is always a bit overwhelming for him, but he gets through it. As many times as he has flown before, he never had to go through the body scan until our trip in October to North Carolina’s Mountain of OZ.

There were a few times over the years when the security lines were not very busy and I wanted him to go through so I could explain it to him without holding up the line. But as soon as I mentioned “autism,” they whisked him though the walk-through before I had the chance to finish my sentence. That was fine, but I really wanted him to do it once in case there was ever a time that we weren’t given the choice. Of course I do explain it all to him while we’re in line and make him watch what everyone else is doing, just in case. But no amount of explaining can take the place of doing.

Heading home from the Charlotte airport — it happened. He had to go through the body scan. As always, I explained and showed him what he had to do while waiting in line. DC’s dad, Doug, went through first and waited on the other side. I was behind DC. The security people saw us giving him instructions and the woman let me get up close so I can show him exactly what to do. He put his feet on the foot prints and raised his arms and waited for them to tell him he was finished. He did a great job.

He turned to walk out of the body scan when the guard on the other side (near where Doug waited) grabbed DC with absolutely no notice and without saying a word and searched him! It happened too fast for either of us to react. DC was now screaming, “Not all right! Not all right!” while I was trying to get through the scan to get to him. Both security guards saw us giving him directions. I told the woman he has autism. I thought that they “got it.” There was no way they couldn’t see that maybe they should approach with care or at least say something to him before he was grabbed and patted down.

I finally made it to the other side and DC was still yelling and really could not function. He couldn’t get his shoes and other items off of the conveyor belt. He just continued to yell, fists in the air: “Not all right!” Now all of the other security people in the area were watching as I tried to calm him down. I prayed that none of them would say anything or try to approach him and make matters worse. This went on for a good long while. I had him sit down and tried to explain to him that he did everything correctly. The man should not have grabbed him without letting him know first. This was not his fault and he had every right to be upset. Eventually he did calm down and there were no aftershocks on the flight home.

People do at times overlook him completely and direct their questions to me instead of talking to him. I always repeat the question to him and make sure he gives the person the answer himself. I mentioned earlier that I thought that there was no way on earth that the security guards did not understand even before I explained that DC has autism. Now as I think about it, I wonder if they actually did understand and decided that due to his autism, they did not really need to talk to DC directly at all.

And that is a problem.

A version of this post originally appeared on Taking It a Step at a Time – Autism.

CLARIFICATION: The image used on this story is from Thinkstock Photos. Vickie C.‘s son is an adult with autism. Hi, Mighty community. We sincerely apologize for the confusion. As Vickie C. explained in her own comment, “They did not search a child or make a child go through the body scan. They also did not treat my adult son with respect.”

The Mighty wants to hear more about your travel experiences as parents of children with special needs. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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