My Journey as a Father to a Child with Autism and Complex Special Needs
As I reflect on this year coming to a close, I want to share some autism parenting tips with other dads, moms, siblings and caregivers who are raising children with complex special needs. I’m Mike Carr and my son Michael is 36 years old, nonverbal, and has multiple intellectual disabilities along with autism.
Key Takeaways:
- Stay humble and ask for help – Don’t guess or improvise; seek guidance from professionals and experienced caregivers.
- Show up consistently – Use the same language, tone, and routines as teachers and therapists to support learning and calm behavior.
- Stop rationalizing and do the work – Prioritize your child’s needs over convenience or personal preference to deepen relationships.
- Build small, repeatable habits – Tiny daily actions can create lasting improvements in independence, bonding, and family life.
Stay Humble and Ask for Help
When my daughter Christy was born, I thought changing a diaper would be simple. I decided to “upgrade” the process with way too much lotion. My hands became so slippery that the diaper tabs wouldn’t stick. The nurse eventually stepped in and fixed everything in about two seconds.
This taught me something crucial about parenting a child with special needs. Humility is essential. When it comes to your child’s hygiene, health and wellbeing, don’t guess, don’t wing it and definitely don’t improvise. Ask nurses, doctors and experienced caregivers for guidance. Your pride isn’t worth risking your child’s care.
Don’t Fake Ignorance to Avoid the Hard Work
When Michael was diagnosed with autism at around 12 months old, we found an incredible therapist who taught us hand-over-hand therapy. This technique helped Michael learn basic skills like eating using a fork and spoon. My wife Kay has infinite patience for this work. I have very little.
During feeding time, I’d watch Michael eat with his fingers like a tiny happy raccoon, foods are everywhere. When Kay insisted we practice the hand-over-hand method, I lasted about 60 seconds before pretending I couldn’t do it right. “Kay, you’re so much better at this,” I’d say. “My hands are too big. You should take over.”
It worked. She took over the hard parts while I did dishes and watched TV. But feigning ignorance became a slippery slope. Soon I wasn’t sure what to ask at doctor visits, couldn’t remember therapy steps, and became disconnected from Michael’s daily life. I was handing Kay the heaviest parts of the load while telling myself I was being helpful.
I’m embarrassed about this one. I still don’t do my fair share, but I’m trying. Now I help Michael shower in the morning. He uses way too much soap and barely taps himself with the scrunchie, so we do hand-over-hand again. When he dresses himself, he’ll come out wearing three t-shirts, mismatched socks and sometimes his underwear on the outside like Superman. But you know what? He dressed himself. I’ll take the win.
Consistency Creates Instructional Control
This might be my biggest challenge with autism parenting and maybe it’s yours too. If I don’t know what Michael’s practicing at school or with his therapists, I can’t replicate it at home. That matters because consistency is the key to instructional control, which makes life better for everyone.
Let me paint you a picture. Ellen (pictured above) is one of Michael’s caregivers and has him working on a puzzle. When I walk in and Michael starts to get up, she calmly says, “Michael, first finish your puzzle.” Like magic, he sits down and finishes it. No drama and no screaming.
Later that evening, Ellen’s gone. I walk in while Michael’s working on another puzzle. He pops up to run to me. I use the exact same words “Michael, first finish your puzzle.” except maybe a little louder with some dad energy. What happens? He runs up, gives me a high five and I slap his hand like we just won the Super Bowl. Then he goes back, picks up the puzzle, looks at me and slowly flips it upside down so pieces fall everywhere. He’s waiting to see my face change and when my jaw clenches, he giggles.
Here’s the thing. Michael is a nonverbal with multiple intellectual disabilities and an IQ around 40, but who controlled that situation? He did. Because he knows Dad won’t stay calm, Dad won’t be consistent, and Dad’s reactions are fun.
This is one of the most important autism parenting tips I can share. Learn what your child’s teachers and therapists are doing. Use the same language, the same tone, the same calm demeanor and the same gestures. Consistency isn’t just nice, it’s the difference between a peaceful evening and picking up puzzle pieces while your child learns how much fun it is to push your buttons.
Stop Rationalizing and Start Showing Up
I rationalize constantly. I tell myself I bring in all the business for our consulting practice, so Kay should handle school and therapy stuff. I need to work out to manage stress, so it’s fine if she makes dinner again. I’ll do the active stuff with Michael like walks and basketball, while Kay does the “easier” stuff inside. I don’t spend as much time with him, so I should be the fun parent, not the one following protocols. The grass needs cutting, the cars need washing, and I’m doing my share. I deserve downtime with a ball game and a couple beers.
Notice how these all start with “I”? What I want, what I need, what I prefer. Not what Michael needs, not what Kay needs, not what builds a strong family. This path doesn’t end in deeper relationships. It ends in distance, resentment and burnout.
I’m trying to shift from big heroic changes to small daily choices. One little extra thing every day beyond what I’d normally do. Help make that extra meal. Do bedtime instead of asking Kay. Practice one skill with Michael for just five minutes. I’m not perfect, but I’m getting a little better.
Build Small Habits That Stick
I’m pushing 70 years old and you’d think I’d have this figured out by now. There are still things I dread doing with Michael, boring tasks that require patience. Kay still does more heavy lifting than I do. But one thing has helped me more than guilt or emotional speeches to myself: habits. Small ones, easy ones and the kind you can actually repeat.
I help Michael strip his bed when he wets it. Yes, he still wets his bed almost every night even at 36 years old. We take the bedding straight to the laundry room together. I give him a shower without stepping in and doing everything for him, letting him do it himself. I practice something that sounds tiny but is huge. Not raising my voice when he tries to push my buttons, even diverting my eyes so he can’t read my frustration.
I track these small wins in my journal every day. When I do one habit consistently, day after day, it becomes less of a debate with myself and more of a default behavior. Once one habit is solid, I stack the next one. Bedding to the laundry room, then loading the washer, then adding soap and then pushing start.
This might sound trivial, but it’s a game changer for you, your child and your spouse. If you want help with habit building, I recommend these books:
Atomic Habits is my favorite. I truly believe that if you start this new year building just a couple of small, doable habits, you’ll enjoy time with your child a little more, and you might even see your spouse smile a little more too.
Final Thoughts on Autism Parenting Tips for Caregivers
These autism parenting tips aren’t expert advice. They’re lessons from a dad who’s made plenty of mistakes raising a son with autism and complex special needs. Whether you’re a parent, sibling or a caregiver to someone with intellectual and developmental disabilities, I hope my honesty helps you avoid some of the pitfalls I stumbled into.
The key takeaways? Stay humble and ask for help. Don’t fake ignorance to avoid hard work. Be consistent in your approach, stop rationalizing and start showing up. Build small and sustainable habits. These principles have helped me become a better father to Michael and a better partner to Kay.
Happy New Year to all you dads, moms and caregivers out there who want to do better but just need a little extra help to get there. We’re all in this together.
Transcription:
Mike Carr (00:06):
As this year wraps up, I’ve been thinking about a handful of lessons I’ve learned sometimes hard way, and I figured I’d share them with the other dads out there who were raising a child with complex special needs. Now, this is not expert advice. This is more like five things. Five things I wish someone had said to me before I did the exact wrong thing. So here we go. Lesson number one, humility is a virtue. So when our first child was born, we were still at the hospital the day after birth and the nurse said, “Dad, you want to put on her first diaper?” I’m thinking, “Not really, but I can’t say that. ” So showing a little false bravado, I said, “Sure.” Thinking, “Well, how hard can this really be? ” So I decided to add a little dad upgrade to the process. I put lotion on my itty bitty little girl’s bottom first.
(00:54):
And because I didn’t know how much lotion to use, I thought, “Well, when in doubt, more is probably better than less.” So now my hands are two greased pigs. I mean, lotion is everywhere. I go to fasten the diaper tabs and they won’t stick because they’re covered with lotion, because I’m covered with lotion. But as you dads know, we don’t give up and we’re certainly not going to ask for help. So then I think no problem. I’ll just pull her onesie uptight and we’ll hold the diaper in place. But before I can turn my cute little Christy into this tiny, sticky burrito, the nurse who’s sort of been watching in the background, this whole fiasco steps in, pulls out a new lotion-free diaper and fixes the whole mess in about two seconds. So dads, the lesson here is simple. Stay humble and ask for help.
(01:42):
When it comes to your child’s hygiene, health or wellbeing, don’t guess. Don’t wing it and don’t improvise. And definitely don’t coat your hands with lotion when changing diapers. Lesson number two. Feigned ignorance is not a virtue. So our son Mikey was diagnosed as autistic at about 12 months old. And after a lot of research, we found an incredible therapist. She taught us a lot in those early years, including hand over hand therapy to help Michael learn a variety of things, including how to eat with fork and a spoon. Now my wife, Kay, has infinite patience with this kind of stuff. Me, I have finite patience, which means very, very little. So it’s my turn to feed him, I’m thinking, how many times do I really need to hold his hand so he learns how to use a spoon? He’s doing fine without a spoon. He’s eating with his fingers like a tiny happy raccoon.
(02:35):
This is great. Now, there was maybe a little food on his shirt and a little on his hair and maybe some on this chair too and on the floor. And maybe I have no idea how this happened. Maybe even a little itty bit on the ceiling. But we were bonding, baby. Father and son time. Then mom walks in. Uh-oh. She takes one look and decides this is not bonding. This is a crime scene. So back to hand over hand practice, I go. And I last about another 60 seconds and I’m thinking, this is like Chinese water torture. And then a lot of us dads do, I got another brilliant idea. I can pretend I don’t know how to do it. So I yell, “Kay, I need your help. You’re a lot better at this than I am. Just look here. I’m not sure I’m holding his hand right and my hands are too big to really guide his spoon.
(03:25):
You should probably take over for Mikey’s sake.” And then like the hero that I am, I added and I’ll do the dishes instead and it worked. He takes over the hard thing and I do the dishes. I’m watching a little TV, of course, because I’m doing dishes and I know I’m helping out. But here’s the thing, pain ignorance is a slippery slope, my friends. Pretty soon I’m not sure what to ask at the doctor visits or I can’t remember the therapy steps we’re supposed to practice at the home or I didn’t quite catch everything the OT, the occupational therapist wanted us to do. And as Kay took on more, I did less. I became more disconnected from Mikey’s day-to-day life, less aware of what he loved, less aware of what he was learning. And I was quietly handing Kay the heaviest parts of the load while telling myself I was ban helpful.
(04:15):
So I am embarrassed to admit this one and I still don’t do my fair share, but I am trying to do better. Now I help Michael take showers in the morning. He still uses way too much soap and barely taps himself with his scrunchies. So I do hand over hand again. “Hey bud, let’s really get this clean.” And when I let him dress himself, he’ll come out three T-shirts on, and socks are never matched. And every now and then he’ll even put his underwear on the outside of the shorts like Superman or something, but he dressed himself independently. So I’ll take the win. Lesson number three, consistency is key. This one might be my biggest challenge, and maybe it’s yours too. If I don’t know what Michael, and he’s now old enough to be Michael and not Mikey, if I don’t know what Michael’s practicing at school or what his therapists are doing, I can’t replicate it at home after school on the weekends or during breaks.
(05:03):
And that matters because consistency is the key to instructional control. And instructional control is what will make your life and your child’s life a whole lot better, but it is not easy. Here’s what instructional control looks like in real life. I walk into Michael’s area right before Ellen, one of his caregivers is about to leave. Michael’s at his table quietly working on a puzzle. He starts to get up when he sees me, but Ellen in her calm, steady voice says, “Michael, first finish your puzzle.” And like magic, he sits down and finishes it fast. No drama, no screaming and no behavior. So later that evening, Ellen is gone. Michael’s working on another puzzle. I walk in again. Michael pops up and starts running over me and I say using the exact same words except maybe a little louder, a little dad energy. Michael, first finish your puzzle.
(05:57):
So what happens? Does he calmly sit down like before? Absolutely not. He runs up, holds his hand up for high five and without thinking, “I slap it like we just won the Super Bowl. Yeah, buddy. Let’s go, man.” Then he goes back to the table. He picks up the puzzle and he looks at me like, “Oh, we’re doing this tonight.” Now I say louder, “Michael, you put that puzzle back on the table right now.” So what do you think happens? He pauses, he smiles and he very slowly flips the puzzle upside down so the pieces fall everywhere on the table, on the floor, while all the time looking directly at me and he waits. He just waits for my face to change. And when he sees that frown start to appear or my jaw clench, he giggles and there it is. Now he’s nonverbal. He has multiple IDs.
(06:55):
He supposedly has an IQ of around 40, but who controlled that situation and who lost it? Because he knows dad won’t stay calm, dad won’t be consistent, dad will react and dad’s reactions are fun. So dads, don’t follow my example. Learn what your child’s teachers and therapists are doing. Use the same language, the same tone, the same calm, the same gestures because consistency isn’t just nice. It’s the difference between a quieter, less stressful evening or you picking up puzzle pieces off the floor while your son is watching or your daughter’s watching and learning how to have so much fun with dad. Lesson number four, rationalization does not end well. I rationalize a lot. For example, I bring in all the new business in our consulting practice. Okay. Should handle all Michael’s and Christy’s school stuff and therapy stuff too. Or I need to work out to manage stress.
(07:54):
So it’s fine if she makes dinner again. Or I’ll do the active stuff with Michael, like the walks and the basketball so Kay can do the easier stuff inside. Or I don’t spend as much time with him, so I should be the fun parent, not the one that has to follow all the protocols. I’m a guy. I’m not built for mom stuff. The grass needs cutting and the cars need washing. So I’m doing my share by doing these things. I deserve some downtime. Ball game, couple beers. Kay can take Michael out today. Now I could keep going, but I bet at least one of these sounds familiar to anyone that’s watching this. And notice how they all start with I. What I want, what I need, what I prefer, not what our son needs, not what my wife needs, not what builds a strong family.
(08:42):
And this path does not end in a deeper relationship with your child or your spouse. It ends in distance, resentment and burnout. So I’m trying to shift from big heroic changes in my life to small daily choices. One little extra thing every day I would normally do. Help make that extra meal with my wife. Do bedtime instead of asking Kay to do it. Practice one skill with Michael for just five minutes. I’m not perfect, but maybe a little better. And this one leads to the very last lesson. Lesson number five, the magic of habit building. I’m pushing 70 years old. So you’d think I’d have figured this out by now. And yet there are still things I dread doing with Michael. They’re boring. They require patience. Kay still does more of the heavy lifting than I do, but one thing has helped me more than guilt or big emotional speeches to myself.
(09:38):
Habits, small ones, easy ones, the kind you can actually repeat. I help Michael strip his bed when he wets it. And yeah, he still wets his bed almost every night even though he’s 36 years old. And then helping him take it straight to the laundry room. Or giving him a quick shower without just stepping in and doing everything for him, but letting him do it himself or practicing something that sounds tiny but is huge. Not raising my voice when he tries to push my buttons, even diverting my eyes so he can’t read the frustration on my face like it’s an eon sign. And I track the small wins in my journal every day because when I do one habit consistently, day after day, it becomes less of a debate with myself and more of a default behavior. And once one habit is solid, I stack the next one.
(10:26):
Bedding to the laundry room, then loading the washer, then adding the soap, then pushing start. Now, I know this may sound trivial, but it’s not. It really is a game changer. It’ll be a game changer for you, your child, and your wife. And if you want help with habits, I recommend one of these three books, Atomic Habits by James Clear, Tiny Habits by BJ Fogg, or The Power of Habit by Charles Duhigg. Now, Atomic Habits is my favorite. And I really believe that if you start this new year building just a couple of small, doable habits, you’ll enjoy your time with your child a little more, and you might even see your wife smile a little more too. So happy New Year’s to all of your dads out there who want to do better, but just need a little extra help to get there.
