When My Medically Fragile Son Can’t Tell Me What He’s Feeling

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What’s it like having a medically fragile child who can’t tell you his symptoms or what his body is feeling?

You hold your breath. You check him over every day for any sign of illness, injury and you hope you find nothing. When there is an injury or illness, you hold you breath. You treat it and hope it doesn’t spread. You keep the dark thoughts in the back of your mind from entering your conscious mind. You pray the doctors are right in their diagnosis and are doing the right thing.

You spend a lot of time researching. And hoping. Hoping something will add up. Hoping the symptoms will come together and make sense.

You spend a lot time teaching. Teaching the language of pain. Hoping he will understand and be able to start telling you. And knowing how hard it is to teach your child the different types of pain. And silently crying on the inside when he does tell you the pain he’s in. Knowing every day he’s having pounding headaches and he’s telling you it feels like sharp knifes.

Then you call doctors. You research. You try to put the pieces together. Treatment begins and you hold your breath. You hope it’s the right thing. But you prepare for it if it’s not.

Sometimes you have to protect your child instead of being able to hug and kiss them. This may be one of the hardest things. When your job just becomes protecting and keeping him from hurting himself because the pain inside himself is too great, you often weep at night for the choices you must make. You just want to hug him and tell him it will be OK and you will make it better. Nothing breaks your heart more than watching him go through this. You feel helpless and try to stay calm and keep searching for answers.

It’s one thing to be medically fragile, but it’s another thing to not be able to explain your symptoms. Everything is locked up inside his body, and you feel like you have to be a behavior detective to figure out what the symptoms are and the cause of those symptoms. It’s a vicious circle. Through it all, you hold your breath. You love harder than most people can imagine because you never know what the next moment will bring. Will there be a dimple smile and tears of happiness or will it be cries of pain?

So you are often holding your breath. And loving. Loving harder than you ever thought imaginable. And when you hug, you hug deeper, stronger and longer than you knew was possible. And you live, live a fuller life than you ever imagined and cherish each moment your child is well and happy and smiling.

And you say I love you. Always. As much as possible. So he will always know your love is there and never wavering.

“When they ask how far love goes, when my job is done, you’ll be the one who knows.” — Dar Williams.

boy smiling

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

 Follow this journey on Kreed’s World.

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When a Delta Air Lines Pilot Gave My Son With Autism an Amazing Gift

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Clicking through the Internet a few months ago, I stumbled upon a story about a girl with autism and her family who were escorted off a United Airlines flight. I cringed. You see, we were planning a trip that would involve four separate flights with Jonah, my very anxious, getting-bigger-than-his-mommy autistic son. It had been a while since we had flown, and I was hopeful this time would be better than the last. But after reading the story of what would be my worst nightmare, I wondered if the tolerance of the flying public had finally snapped.

There was nothing we could do but hope for the best and plan for the worst. And plan, we did.

Our son has an obsession. The one topic he can never get enough of is Delta Air Lines. Now mind you, that doesn’t necessarily mean he’s excited to get on an airplane. He just thinks that if you do so, it should be on Delta. For a few years now, he has been collecting anything that says Delta on it. Our wonderful friends and family always bring him whatever loot they can get off a flight, from wing pins to cookies and even napkins. A flight attendant friend once sent him a box of goodies that kept him happy for weeks.

So, of course, we booked our flights with Delta.

I need to stop this little tale for a second to tell you that having been a part of the special needs community for most of my life, I have observed a few things. And one of those things is this: There is a lot of entitlement that goes on in the hearts and minds of some of us.

Because my life has had this extraordinary challenge attached to it, I can have the belief, at times, that I deserve my fair share of special treatment. There is some truth in this because — I’m not gonna lie — we need a little extra help! But that doesn’t give us the right to be demanding or be ungrateful to those who must go the extra mile on our behalf.

So we planned. First, I planned out all the food and special treats Jonah would need over the course of those four flights. Nobody wants to sit next to a hungry kid. We also made sure there were toys, games and videos to help hold his interest.

Next, we turned our attention to those who would be serving us on the flights. We made a little note card and attached it to a candy bar and passed them out to the entire crew on every flight.

captain.2-001

The response from this little act of appreciation was absolutely amazing!

I’m happy to tell you there are some amazing men and women jetting all over the skies, and when you take a moment to truly appreciate their service, they will go above and beyond the call of duty. Such was our experience.

Rohnda Monroy the mighty.2-001

We didn’t fly first class, but I felt like a celebrity on those flights. Each person working the flight took the time to find us and thank us for the goodies. They then proceeded to check on us on a regular basis to see if we needed anything. Each of them took a moment to acknowledge Jonah and bring him special stuff to make his flight more fun. On every flight, he was invited to the cockpit by the captain. And on the last leg of our journey, Captain Tim Garvin finally succeeded in getting Jonah to agree to visit the cockpit. You see, our kid was still a little nervous, but the kindness of the flight crew won him over.

Why am I sharing this story with you? Because I want to share with you that there are really wonderful strangers in the world, and when we treat them with kindness and appreciation, they will often respond in the most wonderful way.

Rohnda Monroy the mighty.3-001

A few weeks after we came home from our trip, the postman left a package on our doorstep. I wasn’t expecting anything so I opened it with great curiosity. In it, I found the most amazing gift for our son. Captain Garvin, who had already exceeded his duty in his kindness to Jonah, wasn’t done yet.

Inside the box was a real, honest-to-goodness Delta captain’s hat! The beaming joy that sprung to my son’s face was priceless.

So if you find that the world is not quite meeting your expectations when it comes to your child with special needs, try a different approach. Kindness and gratitude has given us much more than an entitled attitude ever has.

A very special thank you to the wonderful people of Delta Air Lines for their extraordinary service and understanding they showed to one little autistic boy who will forever be their biggest fan!

Follow this journey on rohndasue.com.

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8 Things I Want My Employer to Know About My Autism and Me

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I’m so thankful to have a full-time job. It’s the best job in the world, I think. I get paid to watch basketball and travel. Although the people I work with are amazing, there are a few things I want them to know.

1. I want to be pushed.

I appreciate the respect you have for me when you tell me I don’t have to go to meetings, but after a year on the job, I think I need to go.

2. I don’t want you to walk on eggshells.

Again, I appreciate the respect you have for me when you worry about things you ask of me, but I’m a professional. I’m not a charity case. You pay me to provide a service. Please expect and accept nothing but my best.

3. I have not reached my ceiling.

I’m 25 and I have a job that some people work their entire career to have. But I’m not satisfied. I don’t want to be here for the rest of my life. I want to continue to learn and improve, to move on, to continue doing things that people thought I’d never do.

4. I still like to be invited to lunches and meetings.

We all know that I’m likely to turn it down, but an invitation means so much to me. Whether you’re going to lunch or having a meeting, being invited means that I’m included, that you thought of me. I have a tendency to perseverate on things like not being invited. I think that means you don’t want me there. I know, in reality, you’re being respectful of what you think my wishes are, but being able to make decisions for myself is very empowering.

5. Be direct.

If you want something, tell me what you want. Phrases such as “I wish someone would…” are not helpful. Instead, say, “I want you to [insert task here] so that [insert purpose here].” If something I have done is incorrect or you wish I had done something differently, please tell me.

My brain is the worst kind of DVR. There’s no pause and there’s no delete. I replay every interaction, every conversation, every comment, everything over and over and over and over. So, regardless of whether something went wrong or went well, I’ve likely been replaying the occasion over and over in my head all day trying to figure out what happened exactly. I want to trust you will tell me when I mess up, so I can learn and do it differently in the future. And when I do it well, I can do it again.

Erin McKinney the mighty.1-001

6. I want to learn from you.

There are a lot of things in this area I am not good at but I want/need to improve on. One great way for me to improve is to watch you. What you do requires such a high level of interpersonal skills, eye contact, conversations, nonverbal communication. These are things that don’t come naturally to me. I wish I could shadow you, listen to your phone calls, follow you on tours — learn how you do what you do. You are so good at it. I have future goals and aspirations that require me to improve in these areas.

7. When I need a break, I’ll let you know.

Sometimes, I just need five minutes to bounce or spin in my chair. I need to turn my lights off and be quiet or go for a walk. One thing that I love about you is that when I tell you I want to go for a walk, you are always willing to come, too.

8. Most people with autism don’t get to work with incredible people like you.

You are kind. You show up with random things that you think I might like, like puzzles or Minions. You entertain my likes and my preferences, rather than chide me for acting childish. You are accommodating. You let me stim and chew without making fun of me or getting upset with me. You are so conscientious of how you approach me, of my dislike of being touched. You make sure I go to all my appointments, even though I have to miss work for them. When I ran out of medicine, you didn’t send me away. You asked how to help. You always ask how to help. You are so good to me. You respect me as a professional, and more importantly, as a person.

I’m so thankful. I’m thankful to work with an incredible staff who looks out for each other. In my wildest dreams, I could not have imagined working with such an amazing group of people. As we continue to build a culture and set the standard, I also want to set a standard for myself. I want to be held to the highest standard. I hope these eight things will help you as you learn more about what I want for myself, what I expect for myself and what I want you to expect of me. You treat me so well that I want to be better than you ever thought I could be. I want to be my best for you.

Follow this journey on Erinmmckinney.

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5 Things I Wish I’d Known When My Son Was Diagnosed With Autism

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It’s been years now since my son received his autism diagnosis. As I look back at all the progress we have made, and how much our life has changed for the better, I am so grateful.

As I look back, I can also see that many of the things we learned, we did so by trial and error. It wasn’t a doctor, or one specific book or another expert. I believe that by God’s grace it was just us, trying to help our son and figure out how to live this life.

It was sleepless nights and trying one thing, and then another, and then another.

It was trying one special diet, and then another, and then another.

It was going to one therapist, and then another, and then another.

It was trying one medicine, and then another, and then another.

Although I think some of this was just part of figuring this autism parent thing out, there are some things I wish I knew back when my son was diagnosed.

1. The behavior has a trigger.

I repeat, the behavior has a trigger.

Just because I had no idea what was causing it, doesn’t mean there wasn’t a reason for my sons increasingly violent, agitated behavior. After finally getting the diagnosis, it all started to make sense — especially the extreme reactions to things that seemed effortless for other children.

Basic everyday occurrences like putting on socks, wearing shoes that were not crocs, touching grass or sand or dirt or cement with his hands or feet, chewing meat that was a little on the tough side, smelling anything at a restaurant, on a plane, in a public restroom — these things had been causing anxiety and meltdowns for years.

It’s very simple to write the above paragraph now and correlate these triggers to the meltdowns. A few years ago however? Totally different story.

“I have no idea what is going on. He totally lost it today when it was time to get ready for class. He threw his game system at me and started trying to tear his clothes…before I even told him he needed to put his socks and shoes on. My poor boy. What is happening?”

This was a regular conversation I had with just about anyone who would listen. I just didn’t make the connection, or if I did, I didn’t totally trust it.

I wish someone had looked me in the eye and said, “He is reacting this way for a reason. Ask him when he’s calm. Study him when he’s melting down. The answers are right in front of you. You can figure out what is causing some of this.”

2. Figure out what works even if it seems odd.

Occupational therapy has been so, so good for my son (read more about his therapist and our approach here). One of the things we learned very quickly in OT is that my boy loves the feeling of Lycra on his skin. I have no idea why, but it doesn’t matter. Lycra soothes his over reactive sensory system better than anything else we have tried.

When his therapist told me there were sheets made of Lycra, I immediately did some research and intended to buy a pair — until I saw the price. Oh my goodness. No way.

Instead I went to the fabric store with a 40 percent off coupon, bought yards of it and tied it around his bed.

It’s not pretty, but, oh my goodness, it works! It changed our world.

Not only has it helped him relax and sleep at night, but when things are loud and overwhelming or he is just having an off day, he retreats under the sheets for a little while. It calms him down and when he feels better, he comes back out with us.

This is called self-regulation, my friends, and it’s awesome.

For your child, it may not be Lycra sheets. It might be a weighted blanket or squeezing in between the couch cushions. But it’s there. I wish I’d known to look for it.

3. Dress for success.

When I go to our various doctors appointments and therapies, I have found it helps to dress professionally and try to do my hair and makeup (I stress try).

Why? It may not be fair or right, but I find when I am dressed professionally, the doctor is more likely to treat me as an equal. More importantly, if I have questions, my concerns are taken more seriously. When I wear sweats and my hair all a mess, I find I am more or less given instructions, rather than being treated like an important resource.

It may seem a little unfair, but it works. And I wish I would’ve figured it out sooner.

4. Alone time is OK.

It used to make me anxious that my son would spend so much time in his room. He was usually reading, but for some reason that didn’t matter. I thought it meant he was withdrawing from the world and his family.

The truth is, my son just needs more time to himself than I consider average. He is an introvert to the extreme. After being out and about with people (including interactions with me), he needs time to unwind. He needs time to pursue his interests, to immerse himself in learning more and more about all of his favorite subjects.

You know what? He almost always comes out refreshed and ready to once again engage. I have learned to not only respect his need for time alone, but appreciate it. It makes him more capable when he is interacting with us, and I get a little bit of time one on one with his younger brother.

Shawna Wingert the mighty.3-001

5. There is blessing.

Oh boy, this one is big. When we finally had a diagnosis, I was grief-stricken and a little panicky.

My heart felt like it was shattering. All my hopes and dreams for my son felt hollow, and now, unrealistic. I felt robbed.

I had no idea that years later I would say there is so much blessing to be found in this life, even with, and sometimes especially with, this diagnosis.

There is no way I could’ve know the peace and joy that comes from simply having my child give me a hug or enjoy a play date with his friends. I would’ve never counted cooking with my son in the kitchen or shopping at the farmers’ market together a spirit-filled experience.

I do now.

What I wish I would’ve known back then is that all of it is purposeful. It can be messy and sad sometimes, yes.

It’s also fun and new, interesting and challenging, loving and joy-filled.

This is the life we have been given. It is a blend of all of these things — the good and the bad.

What I couldn’t have possibly known then is how grateful I am for all of it.

Follow this journey on Not the Former Things.

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To the Kindergarten Teacher Who Never Gave Up on My Son With Autism

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You know who you are. You know what you’ve done. You try to deny it. You say he’s so smart. He tries so hard. But it’s you. You were the catalyst we needed. You made the difference. You.

You are so humble and genuine. You teach in a private school with neurotypical children. You are in a “regular classroom” but took my son in with open arms. He’s anything but typical. Yet you treated him like all the others. You insisted that you were his teacher, not his aide. You kept him mixed at the tables with the other students. You invited him onto the rug at story time. You kept him in the middle of the chaos, so he belonged.

Tracy Boyarsky Smith the mighty.2-001

But you allowed him to be different and embraced it. You allowed him to use red crayon on his tougher days to complete an assessment. You allowed him to sleep in the afternoon because his little body was worn out from working so hard all day long. You allowed him to take walks when meltdowns proved he had his fill for the day and needed an escape. You pushed him to beat the odds and work hard. You taught him more than I ever thought you would.

When we began our journey, I was so scared that he wouldn’t make it. “They” said he wouldn’t make it. Not at a typical school. Not at a private school. Only a special program would do. He has moderate autism, severe ADHD and everything that goes along with it, yet is quite bright. We were told that most children with his severity of disability don’t have the same cognitive ability he has. You saw it immediately. You saw it, and you insisted I see it, too.

When he came to you, he couldn’t hold a pencil. I just wanted him to be able to write some uppercase letters in crayon by the end of the year. Others had tried to get him to hold a pencil and write, but it just didn’t happen. Within two weeks of being with you, he held a pencil and wrote both uppercase and lowercase letters. You taught him to read. You taught him to cut with scissors. It wasn’t perfect. There were bumps and yelling and throwing and kicking. He tried to escape once or twice. Even with all this, you gave him the foundation he needed for the other team members to be successful, for my son to be successful.

You got in my face. You forced me to believe that he could do it. I fought you. But you insisted. You never gave up on him or me. You not only taught him, you taught me. I learned just how gifted my son really is. I learned that pushing him gently is what he needed. I learned that he can; he is able. I remind myself of this when he flounders. I remind myself of this when I worry. I remind myself of this when people doubt him. I doubt him no longer.

One of the greatest compliments, though, is what you told me at the end of the year. You said, “He made me a better teacher.” Not only did you teach us, you allowed him to teach you. He stretched your limits in many ways. You were already an outside-the-box teacher, but you allowed him to take you further and explore more. We challenged each other because of this little boy. This little boy brings out the best in everyone he meets.

Thank you for allowing us to work as a team. Thank you for seeing him for who he really is. Thank you for pushing us beyond our comfort zones. We are all better because of it. You made more of a difference than you’ll ever know or admit to, and we are forever grateful. Because of you.

Tracy Boyarsky Smith the mighty.1-001

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How to Know When to Offer Unsolicited Advice to a Parent of a Child With Autism

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