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TABLE 5

Selection of Representative Parent Quotes on Engaging in ADHD Treatment Stage 3: Action and Advocacy (“Like the Lone Wolf”)

SubcategoryAction and Advocacy Quotes (Representative Selection)Parent and Child Information
Parents advocating alone “I’m in the middle of doing what’s best for my sons and in the middle of what people says and what my family says, even what their dad believes or not…I don’t know all the answers sometimes. Whether I make the right or wrong choice, it’s always going to follow me.” 29-y-old mother of an 8-y-old boy 
 “It was just in the beginning just getting everything together, because it’s just me, single mom. I don’t have nobody. So, that’s the hard part, but I always get it done.… And if I can’t, I’ll…reschedule it, but sometimes it is hard, just being strap for cash and time and dedication.…” 36-y-old mother of a 13-y-old girl 
 “Well, I always ask who’s willing to help but, the decisions are finally made by me because everyone has a very different opinion. If I can ask my close friends who do not have a child with the problem, they will tell me, ‘Do not give him medication.’ It was what everyone told me.” 40-y-old mother of an 8-y-old boy 
 “I’m like, ‘You’re entitled to your opinion. I’m entitled to mine. And she’s my daughter. So, I will do whatever I feel is fit to keep her nice and healthy, and safe. So until you start raising her, or paying her bills, you have nothing to say to me. And if you do, I have the right to choose whether I agree with you, or whether I don’t.’” 40-y-old mother of a 3-y-old girl 
Feeling unheard and dismissed “I have my concern. I expressed it to the doctors, but they were never concerned, they never looked at it in depth. They never listen to me.… They let it pass.” 42-y-old mother of a 10-y-old boy 
 “So, when I discovered the problem he had, I began to cry because I thought about the 5+ years of the same complaints the school gave me and without knowing what could really.…” 41-y-old mother of a 15-y-old boy 
 “I had already noticed but they did not want to hear me…I talked to his pediatrician and I told him what I was seeing about my son, because it was not normal.… Well no, the pediatrician told me that it was normal. Then…when he came to school…there were many [teachers] that called me that I had to talk to the doctor…and that was when they gave him…medicine.” 48-y-old mother of a 14-y-old boy 
 “A lot of times kids, especially Black kids, they’re stereotyped in a way, you know, thinking that ADHD not really,…they don’t really have it. It’s just a behavioral issue, and maybe the parents are not being stern enough or something like that. I feel that that happens quite often…being a Black or an African American, it’s truly a challenge. You’re not taken as seriously as say someone of a different race if you go in.…” 43-y-old mother of a 9-y-old girl 
 “Telling a doctor ‘Hey, my son has been going through this and I don’t think it’s normal’ and getting a response like ‘Oh, that’s just’ or ‘There’s nothing wrong with him.’” 34-y-old mother of a 10-y-old boy 
Empowered through others’ support and gaining knowledge “I think right now I think I feel very engaged because at the end of the day, I’m coming to them and I’m explaining to them my concerns and what I feel I need help with and they’ll help me.” 28-y-old mother of a 6-y-old girl 
 “So…what could I do?… I did the best I could to learn a little bit about the 504 Plan…I got the school to give him a 504 Plan until I collected enough information about the IEP which was a puzzle. It took me a whole year to understand…I said, ‘Why don’t they give services to my son without an IEP?’ Then, I understood that, you know, it had to do with the state and the funds, and the school not wanting to pay extra services.” 42-y-old mother of a 10-y-old boy 
 “I’ve just read about it a lot. I really like reading, in fact, I’ve always said that people must read in order to know what to answer, otherwise just keep quiet. It’s a decision that I made on my own, because in Puerto Rican’s culture, taking pills means you are crazy.” 34-y-old mother of a 10-y-old boy 
 “At the end of the day, I’m really going to be the only one that makes sure they get the best care. So, I just make sure I go above and beyond to take in everything that I learn, take in everything that’s said to me, all the advice that’s given to me. And like I said, research helps me a lot.” 38-y-old mother of a 16-y-old girl 
 “It is overwhelming but it’s part of being a parent. Children are a blessing and I would say keep pushing forward. Communicate with the doctors, speak to the teachers. If the teachers are not telling you what you want to hear don’t be afraid to…ask to speak to a supervisor. If you don’t advocate for your child nobody else will.… As a parent you have to do your research. These people are here to provide us with support and the information.” 30-y-old mother of a 12-y-old boy 
SubcategoryAction and Advocacy Quotes (Representative Selection)Parent and Child Information
Parents advocating alone “I’m in the middle of doing what’s best for my sons and in the middle of what people says and what my family says, even what their dad believes or not…I don’t know all the answers sometimes. Whether I make the right or wrong choice, it’s always going to follow me.” 29-y-old mother of an 8-y-old boy 
 “It was just in the beginning just getting everything together, because it’s just me, single mom. I don’t have nobody. So, that’s the hard part, but I always get it done.… And if I can’t, I’ll…reschedule it, but sometimes it is hard, just being strap for cash and time and dedication.…” 36-y-old mother of a 13-y-old girl 
 “Well, I always ask who’s willing to help but, the decisions are finally made by me because everyone has a very different opinion. If I can ask my close friends who do not have a child with the problem, they will tell me, ‘Do not give him medication.’ It was what everyone told me.” 40-y-old mother of an 8-y-old boy 
 “I’m like, ‘You’re entitled to your opinion. I’m entitled to mine. And she’s my daughter. So, I will do whatever I feel is fit to keep her nice and healthy, and safe. So until you start raising her, or paying her bills, you have nothing to say to me. And if you do, I have the right to choose whether I agree with you, or whether I don’t.’” 40-y-old mother of a 3-y-old girl 
Feeling unheard and dismissed “I have my concern. I expressed it to the doctors, but they were never concerned, they never looked at it in depth. They never listen to me.… They let it pass.” 42-y-old mother of a 10-y-old boy 
 “So, when I discovered the problem he had, I began to cry because I thought about the 5+ years of the same complaints the school gave me and without knowing what could really.…” 41-y-old mother of a 15-y-old boy 
 “I had already noticed but they did not want to hear me…I talked to his pediatrician and I told him what I was seeing about my son, because it was not normal.… Well no, the pediatrician told me that it was normal. Then…when he came to school…there were many [teachers] that called me that I had to talk to the doctor…and that was when they gave him…medicine.” 48-y-old mother of a 14-y-old boy 
 “A lot of times kids, especially Black kids, they’re stereotyped in a way, you know, thinking that ADHD not really,…they don’t really have it. It’s just a behavioral issue, and maybe the parents are not being stern enough or something like that. I feel that that happens quite often…being a Black or an African American, it’s truly a challenge. You’re not taken as seriously as say someone of a different race if you go in.…” 43-y-old mother of a 9-y-old girl 
 “Telling a doctor ‘Hey, my son has been going through this and I don’t think it’s normal’ and getting a response like ‘Oh, that’s just’ or ‘There’s nothing wrong with him.’” 34-y-old mother of a 10-y-old boy 
Empowered through others’ support and gaining knowledge “I think right now I think I feel very engaged because at the end of the day, I’m coming to them and I’m explaining to them my concerns and what I feel I need help with and they’ll help me.” 28-y-old mother of a 6-y-old girl 
 “So…what could I do?… I did the best I could to learn a little bit about the 504 Plan…I got the school to give him a 504 Plan until I collected enough information about the IEP which was a puzzle. It took me a whole year to understand…I said, ‘Why don’t they give services to my son without an IEP?’ Then, I understood that, you know, it had to do with the state and the funds, and the school not wanting to pay extra services.” 42-y-old mother of a 10-y-old boy 
 “I’ve just read about it a lot. I really like reading, in fact, I’ve always said that people must read in order to know what to answer, otherwise just keep quiet. It’s a decision that I made on my own, because in Puerto Rican’s culture, taking pills means you are crazy.” 34-y-old mother of a 10-y-old boy 
 “At the end of the day, I’m really going to be the only one that makes sure they get the best care. So, I just make sure I go above and beyond to take in everything that I learn, take in everything that’s said to me, all the advice that’s given to me. And like I said, research helps me a lot.” 38-y-old mother of a 16-y-old girl 
 “It is overwhelming but it’s part of being a parent. Children are a blessing and I would say keep pushing forward. Communicate with the doctors, speak to the teachers. If the teachers are not telling you what you want to hear don’t be afraid to…ask to speak to a supervisor. If you don’t advocate for your child nobody else will.… As a parent you have to do your research. These people are here to provide us with support and the information.” 30-y-old mother of a 12-y-old boy 

IEP, individual education plan.

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