Life After Autism Diagnosis | Meet Maurice and Maurice Jr.: Autism is not the end of the world

I am a social worker by profession, and I am a huge advocate for my son, and I do a lot of work, also, in the male community in particular with men of color, working to get them to be mentally and emotionally healthy and encouraging them to be transparent and vulnerable about what itis that they’re feeling. So that’s who I am as a person, and I am excited to be here.

 

Tell me a little bit about your experience when receiving your child’s diagnosis. What were the warning signs? Did you know ahead of time or was this a surprise to you?

 

Yeah, so autism doesn’t run in my family. So, unfortunately, I think with people of color, there are many of us who are missing branches of your family tree. So my father didn’t know his biological father, so there’s a chance that there was something in that branch. My mom grew up in foster care so I’m not sure how much she knew about her biological parents, but to my understanding, there’s no people with special needs in my family, and then my third year in college, I found out I have a child on the way that’s already hard enough, and then, you know, shortly after graduation, you’re at an appointment one day, and they’re like, “Hey, he’s not hitting these milestones. These developmental milestones. He’s not doing this. He’s not doing that,” and you notice you give him a toy and other kids would push the buttons on the toy, and he’s just spinning it around, spinning it around, spinning it around, and they’re like, “He might have autism.” I had no idea what autism is at this point in my life, outside of the movie “Rain Man”. Like that was my knowledge of autism. I’m also like, you gotta be kidding me. Like no one has special needs in my life. So that’s kind of when the whisper started. 

 

I live in Philadelphia so it takes some time to get a developmental pediatrician appointment like six to 12 months for the wait. So they would just schedule the appointment. Worst case scenario is nothing. It’s just, you know, developmental delay, but, you know, well, not best case scenarios, nothing. It’s just a developmental delay, but there’s also the chance that he could have autism. We had a few cancellations so we were able to get in before the six month period, and he was diagnosed on June 16th, 2011 with autism and global development disorder or delay.

 

Talk to me about what resources were given to you upon his diagnosis. Did your pediatrician provide you with anything or were you Googling things? Like how did that work?

 

So after I finished crying.

 

[Interviewer] Right, that’s a part of it, yeah.

 

After I finished crying about it, you kinda catch your breath, and you look in the mirror one day and say, “Hey, I’m on this road now,” you know? There’s a poem called “Welcome to Holland” I like to reference, and it talks about like having this trip to Italy, and then landing and getting off the plane and finding out that you’re in Holland and not in Italy, and it talked about just that disappointment because you were so excited to go to Italy, but you’re in Holland, and then once you kind of calm down, you collect your breath and start to appreciate what Holland looks like and what Holland is, and so once you’re in Holland, you gotta figure out how to speak whatever the language is in Holland. You gotta figure out what the locations are. You gotta figure out what their cuisine is. You have to figure out a whole set of books and catalogs that you had no intention of learning. So it’s really a lot of trial and error, unfortunately. The doctors do point you in the right direction, but a lot of it is trial and error. A lot of Googling, like you mentioned, Sydni, a lot of guessing, a lot of fear, and just hopes that things play out to the best, and you’re making the right decision. Honestly, that’s a journey that you’re constantly on. Like with my son being 13, going on to 14, going on 14 in April, and still a lot of this thing, hoping that this is the best program, hoping that this is the best therapist, hoping that this is the best doctor, hoping that this is the best school, hoping that this is the best therapy. Like you can do your research, but a lot of it ends up being trial and error.

 

Have you thought about transitioning into adulthood? What does that look like? What are your concerns? What are you excited for?

 

Oh, I’m petrified. I’m petrified about what life for him looks like getting older. My big fear is have I done enough to prepare him for adulthood? What will my life look like, you know, when he becomes an adult, and is he ever gonna be able to live independently? Is he ever gonna be able to communicate in a way that he needs to be effective with people that aren’t mom and dad? Have I prepared my friends and family members in the event of my untimely death or something tragic happening to me? Like who picks up the ball in our absence? 

 

I think he’s really dependent right now on his parents to provide a lot for him, and I don’t always feel like that I’ve done the best job of preparing other people for it. Luckily, he does have two younger sisters. One is six, and one is a baby baby, and I fully intend on teaching them and training them to care for their brother, but it’s petrifying. Also, he tends to get aggressive. So eight-year-old, nine-year-old, 10-year-old, 11-year-old, getting aggressive, it’s different than a 22-year-old, 23-year-old. You know, you’re talking about the difference between maybe being able to hold someone back in a full-fledged royal rumble. So it’s incredibly scary. Now, I’m glad you asked that, Sydni, because people, I find people are always offering encouragement surrounding his diagnosis. “Oh, well, it’ll get better.” “I know this person with autism, and they got better,” and I’m like, “I don’t care about that at this juncture. Like I’m fine with this diagnosis. My fear is what does his future look like? Like am I doing enough to prep him for adulthood, and will I be able to personally, myself, like will my health hold up to be able to effectively care for him?” 

 

I do nursing. I do social work in a nursing home, currently. So I see people decline and what decline looks like. I see people as young as 40 and 50 who are bedridden. I’ve seen 70-year-old people in a nursing home, and they’re only family members, their 90-year-old mom, and it’s like, it’s scary, and you look at that, and you’re like, “Is that gonna be me? Am I gonna be that 90-year-old dad, you know, coming to a group home or inpatient setting to check on my 70-year-old child, and if that’s the case, am I doing the work that needs to be done to effectively prepare him for…”

 

Began to speak with friends and family members about exactly what I just talked to you about. Like I’m afraid I need help. I can’t do this by myself. I think that it’s an unfortunate personality trait of mine and probably many others to take these things on by yourself, and you go and say, “Oh, whatever, you know? This is my thing. I’m going to do it, and I don’t need any help.” I think it’s an unfortunate personality trait that many of us have, including myself, and I’m learning now, at age 13, this is hard. You know, it’s difficult. Any parental journey is difficult, but this one, in particular, is difficult. So now, it’s, “Hey, you know,” whereas before it was, “Hey, I can’t come because I have Maurice Junior with me.” Now it is, “Hey, can I bring him with me? I might have to leave early.” Now, before, it was, “Okay, I’ll just order delivery so I don’t have to take him out.” Now, it’s, “Hey,” if a buddy is over, “Hey, can you sit with him while I go pick it up?” Small little things to kind of like introduce people to spending alone time with him outside of my presence, and as he kind of gets older, I look to ramp it up and look to slowly but surely kind of ramp it up so that while it might be a half an hour to an hour today, then maybe next year we can try two hours, and then, you know, maybe the year after that, we can get the four hours, and then, eventually, we can do some overnights so that I’m building a village around him who’s able to care for him effectively.

 

Can you speak a little bit about your experience with the IEP, getting his academia together? What does that look like? Any tips for parents who are new to this and how to navigate the system? ‘Cause I know it can be tricky.

 

Yeah, so advocate. I think that the school will push on the minimum if you allow them to. So I always recommend asking for more. The worst they can do is say no or they can’t do it. A lot of times, they’ll try to, at least, like, let’s say, there’s the school’s giving them a half an hour of speech therapy, you can ask for an hour, and, sometimes, they’ll up it to 40 minutes. It’s not the hour that you requested, but you still got them 10 more minutes of a speech, which doesn’t seem like a lot, but if you factor in the fact that, sometimes, it could take five, 10 minutes just for the kid to get settled down, you just gave your child a lot more time, you know, with the speech therapist. Do them. Don’t be afraid to make them lengthy. 

 

Don’t be afraid to, for lack of a better term, be disruptive. Don’t be afraid to fight. This is your child that you’re advocating for, and don’t kind of let them push off what they see. Like you can question data. You can question information. If the data that you’re seeing, that they’re providing at those meetings aren’t adding up to what you’re seeing at home or in your time with him, “How are you getting this? When he’s home, I never see this. When he’s home, I can never get him to do this. What are you doing? Can I come to the school and do an observation?” You’re able to do all of those things, and on the side note, I would say definitely get FMLA, intermittent FMLA from your job because you never wanna be in a position where you’re, you know, gonna get disciplined from a work standpoint for doing these things, but if you get intermittent FMLA, it’s just a way to say like, “Hey, my child has needs that could pop up out the blue, and y’all can’t fire me.” I gotta go do something for my child.

 

[Sydni] Great tip.

 

And it frees you up to be able to be in that IEP meeting for three or four hours instead of, “Oh, I gotta get this done in an hour ’cause I gotta be at work.” So do it that way, and just advocate as much as you can. They’re a pain.

 

They’re a pain, they’re a pain for everyone even from the school profession standpoint. Like I’m sure they’re not loving the IEP meeting process themselves, but it’s a legal document. It’s a legal document. It’s what the school uses to justify the services that they’re getting, and you want to make sure that they’re getting as many things in place as possible.

 

Yeah, so it’s funny because I’m gonna try not to get emotional when I talk about him because, like I mentioned earlier, Maurice Junior was born when I was in college. I took my third year in college. I was poor. I was scared. I didn’t know anything about life. I was 20, and the beauty about this journey with a kid with autism is that he only wants me. He doesn’t care about my work. He doesn’t care about money. He doesn’t care about clothes. He doesn’t care about video games. He doesn’t care about anything but his dad. He doesn’t ask for anything but to spend time with me, and like that’s something that you can appreciate. You know, like he doesn’t want fancy sneakers. He doesn’t care about name brand clothes. Just wants his dad. More recently, he’s been in love with pizza, and he wants me and pizza, but for the most part, he just wants me, and there’s a beauty to know that this kid, like Christmas just passed. He couldn’t care about what was under the tree. I bought him a box of fidget spinners. He got upset ’cause I made him take the paper off, you know, like, “I don’t wanna take the paper off. I just wanna watch my YouTube right now, leave me alone,” but, you know, generally, he is a really happy kid. 

 

He’s going through that puberty male eating stage. So he’s like a bottomless pit, currently, but he’s always been really happy. He’s helped me through some really tough times in life. I lost my father in 2010. I can just remember being really upset as a 22-year-old kid, losing their father, and just coming home and him not fully realizing what was going on and smiling with that big goofy smile and laughing and wanting me to hug and wanting to rub. He likes my beard so he’ll rub his cheek against my beard. So he wants to rub his cheeks against my beard, and that just cheers you up. Similarly, I lost my mom over this summer, this past July. It’s just been the same. He’s happy to see me. Every time I walk out, I see that big goofy smile. He hugs me, wants to rub his face against my beard. He’s laughing, he’s silly, he’s goofy, and it really helps pick you up in those little moments. He loves to go to Sky Zone or trampoline parks and jump. He loves to watch YouTube. He loves to eat pizza and pepperonis and drink Gatorades. He doesn’t like to play with other people per se, but he does like to stand back and watch other kids play. He loves swings, and so he is just a person like, you know, the rest of us. He just likes to do things that make him happy and makes him feel good. He just isn’t able to communicate this pleasure, which leads to added aggression.

 

Any parting words, any advice, book recommendations, things you just want parents to know?

 

Yeah, it’s not the end of the world, Sydni. I’ll tell anybody that. Literally, I talk to parents with newly diagnosed children all the time, and the first thing I tell them is, “This is not the end of the world, you know?” 

 

That poem, it’s a poem. If you Google, “Welcome to Holland”, it’s literally one of the best pieces of literature I’ve read. It literally just tells the story about how when you’re having a baby, you’re planning this fantastic trip to Italy, I’m sorry to rehash it, and then the flight attendant comes in like, “Hey, we’re in Holland,” and you’re like, “I’m in Holland? Like I wanted to go to Italy. Like I wanted to see all the beautiful places in Italy. What’s Holland?” And you’re upset at first, and then like once you kind of settle down, you look around, you notice that Holland has frozen, and Holland has beautiful windmills and beautiful scenery, too, and it’s not as fast-paced and glittery as Italy is, but it has its own beauty in itself. So any parent in this situation, I just say, “Welcome to Holland. You know, like it’s not Italy, but it’s beautiful in itself, and you learn to appreciate that journey that you’re on because there’s so many…” 

 

Like I live in Philadelphia. Philadelphia is like the nation leader in homicides right now. So he doesn’t wanna go outside. That’s a load off of my shoulders. I don’t have to worry about him running in with the wrong crowd. Doesn’t really ask much. I don’t have to spend a million dollars on Jordans and all these fancy things like that unless I want it for him, but he doesn’t require it. He’s perfectly fine. I think Payless is out of business. I might be aging myself a little bit, but he’d be perfectly fine with some Payless shoes, some Walmart shoes, and just as comfortable with them as he would in some Jordans. 

 

It’s a beautiful journey in a lot of regards. It’s not what you expected. In particular, for someone like myself, my son is my namesake, literally. We have the same name, and finding out you’re having a son as a father, you’re like, “Oh, I can’t wait to play basketball or football,” and I have siblings who coach teams. I’m like, “Can’t wait to play him on your sports team and play video games with him and all these things,” and those are expectations that you are putting on him. Those aren’t things that he wants for himself. So you gotta kind of like learn like because you had this plan, just because the child came into this world with this plan that you had for him, it doesn’t derail from the fact that they’re a human, that they have a life, and that they want to experience pleasures and stuff on their own regard. So appreciate the beauty, appreciate the beauty. I recommend anybody read “Welcome to Holland”. Is written by Emily Perl Kingsley. Literally, just Google “Welcome to Holland”. It’ll pop right up. It’s a very, very, very beautiful piece of literature, and breathe, you know? 

 

It’s not the end of the world. Cry when you need to. Take a breath when you need to. The only other advice I would have is don’t hide it. I think that a lot of times, people with children with special needs do their best to be in hide and denial mode. I think that the best thing you can do is put it out there in the open because then, you build a community, not only a community to other parents with special needs, but you build, you inform your direct community, your direct friends like, “Oh, this child has special needs,” and you spend your entire life identifying your friends and people who are close to you that you love, and then like when things get rough, the first thing we tend to do is isolate from them. Like these people love you. So allow them to love you when you’re in a time of need like that. Allow them into your child’s life. Allow them to help you to take that burden off of you, and you don’t do that by trying to hide it. You don’t do that by trying to deny it. You do that by being transparent. “No, this is hard.” “No, I’m tired tonight.” “No, I’m struggling today.” “No, you know, if I come to this, like can you set aside a quiet room for us?” “If I come to this, can you make sure hot dogs are on the menu? Can you make sure this is on the menu?” Little small things that you can put in place, I’m gone as far as going out to eat, and I called the restaurant in the bed and said, “Hey, I’m coming with a special kid. We’re gonna order blah, blah, blah. Can you put his food on right now though because I don’t want him to have a meltdown while we’re in there.” 

Like, you don’t do that by hiding that though. You do that by accepting what it is, and adjusting your life to him. I’ll tell anybody, I’ll end on this one, I tell anybody, “It’s not my goal to adjust my son to this world. It’s my goal to adjust this world to my son.” Like he’s himself. We have to learn how to adjust to him. He doesn’t have to learn to adjust to us, and I move accordingly to that.

The Families and Stories Campaign is a series of interviews that feature parents of children with disabilities. With topics ranging from transition to adulthood for youth with disabilities to child development milestones, parents, caregivers, and children share their individual joys, fears, and struggles with caring for and being a young person with disabilities. 

We know the journey can feel isolating; our Families and Stories Project amplifies the voices of families like yours and builds a community among us. We are here to help.