Mike Carr shares a heartfelt story about the overwhelming challenges of blood draws for his profoundly autistic, 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
When our son was about three years old, he had his first seizure. If you’re a parent of a child with seizures, you probably remember the first time you saw one—it’s terrifying. For us, it started out of nowhere. He fell over, his breathing became irregular, and suddenly he started turning blue. In that moment, the fear that he might stop breathing entirely gripped us. We didn’t know what was happening, so we did what any parent would do—we called EMS. The ambulance arrived, lights flashing, and they rushed him off to the hospital. My wife Kay and I followed close behind, hearts pounding in our chests.
Finally, the doctor came out and said the words that would change our lives: “Your son had a seizure.” It was the beginning of a long, uncertain journey.
The Medications and Endless Seizures
From that day on, it was all about managing seizures. The doctors suggested an EEG to locate where the seizures might be originating in his brain, but since our son is profoundly autistic and nonverbal, he wouldn’t tolerate the EEG cap. So the next step was medication. One medication turned into two, and then three—but the seizures kept coming.
Years passed, and we tried nearly every seizure medication available. At one point, we even had to keep oxygen tanks at home. If EMS was delayed or the seizure lasted too long, his irregular breathing meant his brain wasn’t getting enough oxygen. The fear of brain damage was constant. It was a grueling process with no easy answers.
The Blood Draw Ordeal
Part of the medication journey meant regular blood draws. Seizure meds can affect organ function, and we needed to monitor his liver and other vital markers. But drawing blood was an entirely new challenge—one we were completely unprepared for.
The first time wasn’t so bad. Our son, who doesn’t fully understand what’s happening around him, lay on the exam table, staring up at the harsh lights. He didn’t know what to expect. The nurse came in, poked his arm, and while it wasn’t easy, we got through it.
The second time, however, was a completely different story.
He remembered.
The moment he saw that exam table, he resisted. It took four of us—three nurses and me—to hold him down. I was on top of him, knees pinning his arms while he screamed and cried, trying to wriggle free. The experience was traumatic for him, exhausting for us, and at the end, the nurse told us, “We just don’t think we can handle your son anymore. You’ll need to find another place for blood draws.”
Now what? We had nowhere else to go.
My Wife’s Determination
This is where my wife, Kay, deserves all the credit. She is one of the most persistent and resourceful people I know. While I was overwhelmed by the challenge, she went to work. She researched, experimented, and tested ideas until we finally found a method that worked. It took trial and error, but we discovered six key steps that made blood draws quick, calm, and as stress-free as possible for our son.
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
Distraction is a powerful tool. During the blood draw, we play our son’s favorite music or videos on a phone or tablet. He loves music, so hearing his favorite songs helps to shift his focus away from what’s happening to his arm. For parents of nonverbal or profoundly autistic children, this step can be a lifesaver.
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 step is critical. An experienced technician can locate the vein quickly and get the job done in less than a minute. Speed matters. The faster the process, the less time your child has to become agitated. If you’re unsure, ask for the most experienced person available—don’t be afraid to advocate for your child.
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
The moral of this story isn’t just about blood draws. It’s about resilience, persistence, and problem-solving. Parenting a profoundly autistic child comes with unique and overwhelming challenges, but where there’s a will, there’s a way. It might take time, trial, and error, but solutions are out there.
If you’re a parent facing a similar struggle, here’s my advice:
- Ask questions: Don’t hesitate to challenge the status quo. If something isn’t working, speak up and ask for alternatives.
- Do your research: Explore tools, resources, and techniques that might help. Sometimes the smallest adjustments make the biggest difference.
- Keep trying: Trial and error is part of the process. If one approach fails, don’t give up. Keep testing new strategies.
- Lean on others: Reach out to other parents, support groups, or experts. You’re not alone, and sometimes others have already found solutions that could work for you.
Our story is proof that with persistence and creativity, even the most daunting tasks can become manageable. It’s not about having all the answers—it’s about refusing to quit until you find something that works for your child.
Moving Forward
Today, blood draws are no longer a source of dread. We know what works for our son, and we stick to it. It didn’t happen overnight, but it did happen—because we refused to give up.
Whatever challenge you’re facing, remember this: you’re stronger and more resourceful than you think. Your child is counting on you to keep going—and you will.
We’ll talk more next week. See you then!
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.
