Our September meeting drew over 30 fathers and father figures from the Philadelphia area, New Jersey, Delaware, Chicago, California, Canada, and North Carolina. We asked if our support group has made a difference in their lives, and what is that difference?
The father of a 16-year-old daughter who has been coming for a few years shared
“It’s another tool in my toolbox. I was reminded this week in therapy with my daughter and my wife. Just to hear the other guys’ experiences keeps me going, that I’m not alone, that other guys are going through this, that I don’t have to do it perfectly. I don’t know how to be a parent to an autistic 15-year-old girl. I just don’t, but I’m doing my best.
Then the father of a nonspeaking daughter jumped in to share.
“It’s just you hear your own story, as you listen to everyone else’s story, and it’s really the same for you. It’s been maybe 2 or 3 years I’ve been able to participate sporadically and be part of this group, but it makes a huge difference to show up here and you’re not alone. Our daughter’s nonverbal, but I can hear some of your story in our story.”
Another father reported,
“It’s great to see everyone. And I’m grateful not only for this hour once a month for the camaraderie and the compassion, but it’s what I can take from here almost as an incubator and export it to the outside world. So my buddy and I, inspired by this group and then the conference in person in Philadelphia, we started a dad’s group for the dads in the program in which our 2 sons are participants. We probably went an hour more than we thought we were going to. Because it was so successful, we’re having another next week.
The father of a 14-year-old added,
“As C.S. Lewis said ‘You too? I thought I was the only one!’ It can be really isolating being a parent of a loved one that has special needs. I appreciate that this is a safe space that if there’s something perplexing me, I have this father’s group I can bring this up with, or the GroupMe. The camaraderie is definitely a lot. My son is, like, and is the most cheerful person that I know. He’s also minimally verbal…I think it’s year 4 for me. So glad to see so many new faces as well as those I recognize.”
Piggybacking, the father of two autistic kids, who are 3 and 5, talked about.
“The concept of protecting autistic joy has become a little chestnut that I wasn’t expecting to latch on to, but it’s become a north star in some ways in terms of guiding decision making. How do I handle certain situations? Can I keep this in my mind when I’m about to lose my mind? Because when we’re at Costco and the kids are hitting each other or they’re yelling or they’re doing whatever. At least for me, you might get some sort of piece of wisdom from someone, especially someone who’s maybe been down the road farther than you are, whose kids are older, has more experience, and you never know how you might be able to apply that.”
One of our veteran fathers for the past 3 or 4 years spoke up next,
“I want to reiterate that the value that the group brings to me is that it’s okay to make mistakes. We all do. We don’t always get it right. But there’s also something else that I think is really important. There’s a lot that we do get right, and this is a place where it’s acknowledged and understood. A lot of people don’t understand the effort that it took to get that decision right. People here do. They understand how hard it is and that successes are not easy. But there’s great successes and great things that you get right, and here’s a place to celebrate them.”
Michael Hannon shared about presenting at a virtual conference with his wife about autistic joy,
“We’re talking about our experience and we’re talking about protecting Black autistic joy and what that looks like in our son and in our family. We made sure we said we’re not we’re not speaking for all Black families who have autistic relatives, but, you know, we certainly have some knowledge about this in our own life. The focus of the conference was the intervention model of floor time. They kept talking about the importance of being in places where you are seen, heard, valued, and known. Took me out. I can come here, and I know I’m going to be seen, heard, valued, and known. I can’t go out into the broader community and talk about how my son was nonspeaking until he was close to 4 without fearing some judgment or some stereotype or prejudice. I can’t talk about my son’s photogenic memory in ways that people would appreciate because they know. Right? Here, my experience is going to be known in a really unique way, and I appreciate that.”
A father who hadn’t been to the group for a while spoke up next,
“I just want to say it’s good to see my brothers. When it comes to your family, it’s a real sensitive subject because you don’t trust too many people. I have 2 autistic kids. I want to tell you guys that my children have taught me and my wife how to really deal with this thing, how to be a part of their life. We were embarrassed and ashamed of certain things, but I tell you, they’re the ones teaching us. They’re the ones that encourage us, they’re the ones that make us go on every day. I’m an African American executive in the banking industry. They may see me, but they don’t know me. My wife was my advocate that told me about this, and I did not know what she was talking about. I was in denial so bad, and she was the one that held it together. She was the rock.I’m telling you, this group means everything. This is a place that you could breathe, this is a place that you can get courage, this is a place that you found out that you did things right, this is a place that you know that your kids are listening to you fight for them.”
A group member who has been sober in AA for 25 years, spoke next,
“We use the same principle in AA that we do here. We get together, and we identify, and we get the support and that’s what this does for me. I’ve had some conflicts of interest with work, so I haven’t been able to attend for almost a year. But every time I show up here, I feel perfectly at home. The combination of the asking for outside help and keeping that up has given me and my wife the tools to mitigate some difficult situations. Now, my son is 14 and he’s just thriving. He started high school 3 weeks ago, and he found a way to own his own being and things that bothered him a year ago do not bother him anymore now. My son was the first one to own his autism and say, I’m autistic, and it’s okay.”
A father new to the group added:
“Everybody said everything I would say pretty much. My kid is autistic, and he went to a public school from kindergarten til 2nd grade, and we mingled with the parents a little, but there was never really anything beyond that. There weren’t any play dates. There weren’t any gatherings of the parents of the special needs class. So anyway, this has been very helpful. As somebody said, many people in this group are way further down the road than I am, and I found a lot of stuff invaluable. It’s just great not to feel alone. And then second, just to get good advice, possibly save time, and be a better father is the main goal. I think this is great. I’m glad you guys do it.
Robert jumped in to talk about Gus Walz:
“Just last month in front of like, a 100,000,000 people or probably more, Gus Walz jumps up and said, ‘That’s my dad! That’s my dad!’ In the most public display of neurodivergent joy that you can imagine. And his dad said, watch out for project 2025. So if you actually go read a little bit of this 800 page document and you look up education, Project 2025 would end special education as we know it. So it’s really important. Whoever you vote for usually, or not vote, this time for people that are going to continue special education as it is and other social programs as they are. That project 2025, if you haven’t looked at it, is a disaster area. Most aspects of our lives would be radically different under that plan. But really important, look at the issues and decide where you stand and vote. A lot depends on this election, more than ever in our lifetime.
Another new dad jumped in,
“I am very happy to be a part of this group. You know, I’m almost in tears that I couldn’t find this group 12 years ago. My son is almost 12. He has been diagnosed with autism, speech delay, and intellectual disability. We have had such a rough 3 or 4 years since the pandemic. We live in an apartment, and we’ve had neighbors call the police on our son because he made too much noise. My son was enrolled in his 1st year of middle school, 5th grade. In August, 2 weeks later, we got called into the principal’s office and he told me and my wife that my son was the worst student he’s ever had in his 12 years of being a principal. So we had to find another school for him, and we were very fortunate that he is in a specialized private school. I just want to say to the other father going through a similar situation, don’t give up! I don’t really have a lot of people I can speak to. But once again, just thank you for inviting me into your group.
Another new father spoke next and shared his story,
“I have a 13-year-old daughter and an 18-year-old son, who started college this year. But my 13-year-old daughter is a special needs kid. She’s in an IEP program at school. So different challenges there. I’m a single parent. My wife passed away 8 years ago. My daughter has been challenging. Being a single parent and father of a girl, that is a bigger challenge. At that time, she was very little. She was not even communicating, and she couldn’t even recognize a lot of things around her 8 years back. Now we have come a long way. She’s very communicative, very social. I’m happy I got her to whatever she is today.”
With 15 minutes left in our 60 minutes together, we encouraged folks, who had not spoken out, a father came forward to say,
“I want to just state that the most helpful thing that I get from these meetings is hope. A lot of insights and valuable nuggets often that I can keep reflecting on and applying them in contrast to other groups that I have tried. Because my wife and I often get depressed. Actually, it’s very depressing to hear from other folks, and mostly, they are not fathers. It’s mostly mothers. And they are, you know, very candid. But here there is hope, and that’s the most important aspect that I get from these meetings.
Another father new to the group, spoke next,
“I am a social worker. So I am that person that’s always the one to support others. And every helper knows they need help as well for themselves. Both of my sons are adopted. My family is my husband and I, so we have different dynamics, different intersections that make up our family. Both of our children are medically complex, and one of them has autism. So when you bring all that together, we’re persons of color. We have all these different intersections with our family, and I lead with my lived experience when I’m working with other families. But there are so many times when you are that family that you also need to be able to come together in a room and speak to others that have that lived experience and not be the one that’s looked upon as that, savior or problem solver, but just as a kindred walking in experience of life. So something like this is very helpful for those individuals that bring into a situation their lived and work experience, but need that also as support for themselves.
Another new father, also a therapist, spoke next,
“I appreciate you guys. I’m new here too. I am also a therapist, and so I relate strongly to that feeling of not having or being in that role many times for many people. And, you know, over the last 9 years of my daughter’s life, a 9-year-old with autism, ADHD, and definitely experiencing a lot of similar things you guys are describing. One of the things that’s really been interesting is the loss of friendships over those 9 years of people who just didn’t get it and attribute it to other things. Nowadays, I have my best friend since high school, and he has kids that are on the spectrum and medically complex like my daughter. And he’s about the only person I can talk to. It’s not the same as having a group to go to where I can feel like I don’t have to be something because I still feel like I have to be a support for him. It’s nice to hear your stories of hope and just being able to be present to other dads going through this. I’m a therapist, and I’m still lost half the time.”
A father we hadn’t seen for a while was next:
“ I just wanted to just express how important you guys are to me and how important this group is. My son is 13 now. and he’s doing great. He’s just started 8th grade. He’s growing. He grew 2 sizes over the summer. He’s grown stuff where stuff wasn’t before. We forget sometimes that these kids, and they turn into big human beings. Some things that he did before, he’s not doing now. He’s coming into his own and he settled into his gift, which I prayed for. His thing is music, so he’s taking piano lessons now, believe or not, and singing in the church choir and doing things in school. So, eventually, your children, they’re just going to blossom and do things that you never thought they could do. And I think that’s the best part of it is, if you’re patient and just take it one day at a time and peel back the onion, you’ll see that the stuff you’re putting into them definitely comes to fruition and the stuff that God puts into them is going to come out as well.So this group is part of that, and the whole thing about being seen, heard, known, and valued, and that’s important to my son. He needs to know that. Protect that autistic joy. Again, try not to get in the way of that because the things that they’re doing is not something you would do, and that’s okay too because they’re on a different frequency.
A grandfather who comes regularly spoke next,
“The psychiatrist who used to work with autistic people said there’s nothing more important for an autistic child than being understood. And this is not only about autistic children. When I am here, I feel understood, and I understand. And this is very important. That’s the importance of this group for me.
The father of 8-year-old twins diagnosed with autism and ADHD was next:
“Most of my life, I’ve spent being in the problem-solving phase of everything. I think probably most of us, I see lots of head nods. I’m always on the next fix for something. And as men, I think we’re kind of accustomed to that. In this group, I can break away from that and share my feelings.”
Next, we heard a familiar story from the father of a 3-and-a-half-year-old:
“We’re in the beginning stages of really accepting the diagnosis and coming to grips and understanding how to realize it ourselves and how we communicate it to our friends and family. The isolation could be good and bad. Sometimes my wife and I find ourselves in a bubble and, honestly, it’s allowed me at times to forget. Then when we’re out in public, it comes crashing down in certain moments. That actually happened this morning at my nephew’s soccer game. My son loves to run, and he was running into the game, and I was getting hit with soccer balls while I was taking him off the field. It came crashing down. We’re on a different path. I was pretty down before coming here, and this has been really therapeutic. I didn’t think that there was something like this out here. I’m glad that my wife is the one that actually saw the flier and forced me to come today.”
Michael summed up our meeting:
“As the group evolves, we’ll be making some decisions. Is it better to go into breakout rooms? Do we all stay in the same space because we want to maximize our time? I also want to acknowledge that stuff evolves, and things change, and that’s okay. I hope you’ll be patient with us as we figure this out for the guys who’ve been here in the past and for the new guys. We hope that your schedule will allow you to be back in the months ahead. We’re on the 3rd Saturday of every month between now and June with the exception of April when we will meet on the 4th Saturday of that month.
Robert Naseef dded this in closing:
“I’m actually speechless, and I’m rarely at a loss for words. Our biggest turnout ever and very diverse in every way. Many intersections here, different faith communities, different ethnic backgrounds, It’s really inspiring. In a world that’s increasingly polarized, coming together here gives me hope and inspires me. Please vote. Our kids’ lives depend on it, and the generations after us depend on it, not to speak of our own generation. Please vote and get everybody you know to vote. So thanks for being here. Hope to see you next month.”
We are grateful to be in community with these fathers and look forward to the insights our meeting in October will bring.
Robert Naseef and Michael Hannon