Mike Carr shares a heartfelt story about the overwhelming challenges of Autism Blood Test, nonverbal son—a process that once brought fear, trauma, and tears for their entire family. After being told by a nurse that they could no longer accommodate their son, Mike’s wife took matters into her own hands. With unwavering love and determination, she researched, experimented, and discovered small but powerful ways to make the experience better. Their six gentle strategies—using numbing cream, choosing a comfortable chair, involving a trusted support person, playing favorite music or videos, offering a beloved snack, and ensuring a skilled professional is present—transformed the procedure. What once felt impossible now takes less than a minute, with far less stress for everyone.
The First Seizure: A Parent’s Fear
Oh man, it was terrifying. Our son was three, just a little guy, and out of the blue, bam – seizure. If you’ve been there, you get it. It’s like your whole world just explodes. He was fine one second, then on the ground, gasping, turning blue… I thought I was going to lose it. All I could think was, “Oh my God, he’s going to stop breathing.” We totally panicked, called 911, the whole bit. Ambulance screaming, lights flashing, the works. Kay, my wife, and I were right behind them, hearts in our throats.
And then the doctor comes in, and he says those words that just…everything changes. “Your son had a seizure.” Just like that. Our world tilted. It was the beginning of this long, scary journey, and we had no clue what was coming next.
The Medications and Endless Seizures
After that, it was all about the seizures. The doctors wanted to do an EEG, you know, to see where in his brain they were coming from. But our son’s profoundly autistic and nonverbal, and there was just no way he was going to tolerate that cap. So, meds it was. One med turned into two, then three… but the seizures? They just kept happening.
Years went by, and we tried every single seizure med out there. Seriously, every single one. We even had oxygen tanks at home for a while. Because sometimes, if the ambulance was late or the seizure lasted too long, his breathing would get so messed up that his brain wasn’t getting enough oxygen. The thought of brain damage? It was always there, hanging over us. It was…exhausting. Just this constant battle with no end in sight.
The Blood Draw Ordeal
And then there were the blood draws. Ugh. Seizure meds can mess with your organs, so we had to keep an eye on his liver and all that. But getting blood from our son? Whole other level of impossible. We were so not ready for that.
The first time wasn’t too bad, actually. He didn’t really get what was happening. Just kinda lay there on the table, staring at the lights. The nurse came in, poked him, and we got through it. Not fun, but doable.
The second time? Oh, man. Totally different story.
He remembered.
The second he saw that table, it was game over. It took four of us – three nurses and me – to hold him down. I was literally on top of him, knees pinning his arms, while he’s screaming, crying, trying to get free. It was…awful. Traumatic for him, exhausting for us, and at the end of it all, the nurse just says, “Yeah, we can’t do this anymore. You need to find somewhere else.”
Seriously? Now what? We were stuck.
My Wife’s Determination
Man, Kay is a superhero. Seriously. I was about to lose my mind trying to figure this out, but she just took charge. She’s like a bloodhound when she gets an idea in her head. Researched everything, tried a million different things, until finally, we cracked the code. It wasn’t easy, but we found these six things that made blood draws…dare I say…almost pleasant? Okay, maybe not pleasant, but definitely way less traumatic for everyone involved.
Six Steps to Stress-Free Blood Draws
1. Numbing Cream
The first step is using numbing cream. Apply it to the spot where the blood will be drawn, and let it sit for about 20-30 minutes. This desensitizes the skin, so our son doesn’t feel the needle going in. It seems obvious now, but no one had ever suggested it to us. A simple tube of cream made a huge difference.
2. Avoid the Exam Table
The exam table was a trigger. Lying down under harsh lights felt threatening and unfamiliar. Instead, we had the blood draw done in a regular chair. This simple change made the environment feel less clinical and intimidating. Sitting upright helps our son feel more in control and relaxed.
3. Familiar Faces
A comforting presence can make all the difference. We made sure someone our son knows and trusts sits directly in front of him during the blood draw. For him, seeing a familiar face brings a sense of security and calm.
4. Music and Videos
Okay, so, distraction is your best friend here. Seriously. When they’re getting ready to poke him, we bust out the iPad and crank his favorite tunes or videos. It’s like magic. He gets so into the music, he barely notices what’s happening with his arm. If you’ve got a kid who’s nonverbal or profoundly autistic, you NEED to try this. It’s a game-changer.
5. Snacks
Snacks serve as both distraction and reward. We bring along food our son absolutely loves. Offering him a bite of his favorite snack during the blood draw not only keeps him occupied but also turns the experience into something more positive.
6. Find an Experienced Technician
This one’s huge. You want someone who knows their stuff. An experienced tech will find the vein quickly and get in and out in like, a minute. Speed is everything. The faster it’s done, the less time your kid has to freak out. If you’re not sure, just ask for the most experienced person they’ve got. Don’t be shy about it! You gotta be your kid’s advocate.
Success at Last
With these six steps, blood draws are no longer the traumatic ordeal they once were. Now, my wife takes our son for his blood work, and it’s over almost as soon as it begins. She’s told me that by the time he even notices the needle, the technician is done. He’s distracted by music, videos, snacks, and a friendly face—and best of all, he’s sitting comfortably in a chair.
For a long time, I never thought we’d get to this point. The blood draws used to leave everyone feeling defeated—our son, the nurses, and us. Now, it’s a smooth and manageable process.
The Bigger Lesson for Parents
This whole blood draw thing, it’s not just about poking a needle in my kid’s arm, you know? It’s about…figuring life out. It’s about never giving up, even when you’re exhausted and frustrated and just want to scream. Parenting a kid with profound autism? It throws you some serious curveballs. But you gotta keep swinging. There’s always a way, even if it’s hidden under a pile of “nope, that didn’t work either.”
If you’re banging your head against a wall right now, here’s the deal:
- Ask all the damn questions. Don’t be afraid to be “that parent.” If something’s not working, speak up! Ask if there’s another way. Doctors, therapists, teachers – they work for you.
- Become a Google sleuth. Seriously, the internet is a goldmine. Look for tools, tricks, anything that might help. Sometimes the smallest tweak can make a world of difference.
- Don’t you dare give up. You’re gonna try things that fail. Miserably. That’s okay. It’s part of the journey. Just keep trying until something clicks.
- Find your tribe. Talk to other parents who get it. Join a support group, find an expert who speaks your language. You’re not alone in this crazy journey. Someone else has probably already MacGyvered a solution to your problem.
Our story? It’s proof that you can do hard things. Really hard things. You don’t have to have all the answers right away. Just don’t quit on your kid. Keep fighting for them. Keep trying. You got this. I promise.
Moving Forward
Isn’t it crazy how things change? I mean, seriously, blood draws used to be this HUGE, terrifying ordeal for us. Picture this: me, sweating, Kay on the verge of tears, our son screaming like a banshee… it was a whole production. Now? It’s practically a walk in the park. Okay, maybe not a walk in the park, but definitely manageable. We found our groove, you know? We know what works for our little man, and we’re sticking to it like it’s the last life raft on the Titanic.
It wasn’t easy getting here, though. Let me tell you, there were days (okay, weeks…months…) where I thought we’d never figure it out. But we did. Because that’s what parents do, right? We keep going. We keep trying. We keep fighting for our kids, even when it feels like we’re hitting our heads against a brick wall.
So, if you’re reading this and you’re in the thick of it right now, if you’re feeling lost and overwhelmed and like you’re never going to find your way out…hang in there. You’ve got this. You’re stronger than you think, more resilient than you realize, and you WILL find a way. Trust me. Your kiddo believes in you, even if you don’t believe in yourself right now.
Alright, I gotta run! School drop-off, errands, the usual chaos. But hey, you know what? I wouldn’t trade it for the world. Talk soon! 👋
Transcript
Mike Carr (00:06):
So today we’re going to talk about how to draw blood quickly and easily. So when our son was about three, he had a seizure and we had never seen a seizure before. And if you’re a parent of a child who has seizures, you can probably remember the first time you saw this because it’s really scary. So we didn’t know what was going on. He fell over, his breathing was irregular, and we were a little worried that he wasn’t going to breathe right. He might even stop breathing. He started turning blue, so he clearly wasn’t getting enough oxygen. So we of course called EMS and they showed up and rushed him off the hospital. And Kay and I, my wife and I, got in the car and of course, followed them to the ER and were nervous, don’t know what’s going on. Finally, the doctor comes out and says, well, your son had a seizure.
(00:55):
And we had never again seen that before. I said, okay. And so then we started the journey of meds, medications, because he wouldn’t wear an EEG cap first protocol. The first step was to let’s stick a cap on him and get an E, EG and try to figure out where the seizures emanating from within the brain. I didn’t work. And even it had worked. We’d probably be on seizure meds anyway, so we started him on a seizure. Med first. Seizure med, great. He’s on medication. Guess what? Seizures kept happening. Okay, Friday second, seizure med, still seizures kept happening. Let’s put two of ’em together. Seizures kept happening. So over the course of literally years, we have tried an incredible number of these seizure medications. At one point, we even had oxygen tanks, right? Because depending on how long it takes for EMS to get to us, and depending on where he has a seizure, one of the problems with seizures, it affects your respiration, your breathing’s, irregular, your brain’s not getting enough oxygen, you can have brain damage.
(01:54):
So we had oxygen tanks with us. But one of the other parts of this journey when you’re on medication like this, is you have to go in for the annual blood draw because certain medications, seizure medications, especially if the dosages, our sun was taking them in and cause organ damage. And so we want to make sure that the dosage wasn’t so high, that particular markers might show up indicating that the liver is being affected or some other organs being affected. So we get to take ’em in for a blood draw. Now, our son, nonverbal iq, less than 60, less than 50, actually doesn’t really understand what’s going on. Take him into the exam room and he lays down on the exam table, looking up at the lights, staring him in the face. Not a real comfortable position to be in, but he had never done this before.
(02:43):
And okay, he was willing to tolerate it, come in, poke him in the arm, feels the pain, have to hold his arm down a lot of effort. We get the blood for the first blood draw. But next year, as you can imagine, he was ready, right? Get him in the exam room, sees the table, lies down the table, remembers what it was like last year. No way. It took four of us with me literally on his chest. So I was on top of him on the table with my knees over both of his arms holding him down while three other people held him down. So we or two other people held him down. So the fourth person could take the blood and after a lot of screaming and yelling, and you wouldn’t believe it, you probably would if you’ve gone through this before. We got his blood.
(03:34):
And on our way out, the nurse said, you know what? We just don’t think we can handle your son anymore. You need to find some other place for that blood draw next year. Okay, now what? We’d have nowhere to go. This wasn’t any fun for him. It certainly wasn’t any fun for us. So my wife being the incredibly persistent, tenacious soul that she is, and I know any mom watching this probably feels the same way, that often the husbands will sort of brush that piece of the challenge off to the moms and dads. If you’ve done it, congrats to you, because I was not that diligent or persistent, but our wife was, and she did all kinds of research, trial and error. We tried all kinds of things. We finally came up with six, six things that if you follow these, we think it’s going to make drawing blood for your child, even though they’re profoundly or severely autistic.
(04:29):
And you can’t really explain to them what’s going on about as quick and easy as possible. So number one is getting some numbing cream. This is a topical cream that you can apply to the arm where they’re going to get sticked and you let it sit for a couple minutes and it numbs the skin. Now, you would think that’s pretty obvious. Nobody suggested that to us, not a single person. Great. That’s important. Number two, get out of that exam room with the exam table. Go to where most people have their blood drawn, which is sitting in a nice comfortable chair. The lights aren’t in your face. He’s used to sitting in a chair. It’s not nearly as scary or as uncomfortable as that exam table that they had him lay on. Number three, have someone he likes and he has some favorite colleagues sit right in front of him to distract him.
(05:26):
Number four, you distract him with music that he likes. Our son loves music, so we’d play the music tunes, the songs that he really enjoyed. Maybe even have him watch a video with Ellen right there talking to him and distracting. Number five, food. Get his favorite snacks out. So not only does he get Ellen, does he get music? Does he see the video? But you’ve got some food in the mix. And number six, even though it’s last, it’s not the least important by any means. You find someone that’s done a lot and a lot of blood draws, someone that can stick ’em quickly, get that blood out of them quickly. So the whole thing is less than a minute, we have managed with those six steps to make the blood draw about as pain-free and stress-free as possible. Now my wife takes ’em in because being that I get responsible dad that I am, I don’t generally go do these things.
(06:27):
So anyway, my wife takes ’em in, but she’s reported back to me several times that it took less than a minute. And Michael had no problem. By the time he felt the needle in his arm, she had already gotten the blood. Plus he was being distracted watching the video, listening to the music, Ellen’s in his face, he’s eating his favorite stuff and he’s sitting in a chair. So I think the moral of this story is not just for blood draws, but for anything else that you and we as parents of as severely or profoundly autistic child or adult, have figured out is it where there’s a will, there’s a way, right? That if you are persistent, if you ask friends, if you do the research on the internet using ai, now these days, often you can find something that might work and then with some trial and error, it will work for your son too. Talk to you next week. See you.
