A Mother’s Journey of Advocacy and Acceptance: How to share an Autism Diagnosis | Meet Miranda and Magnolia

My name is Miranda Georgetown Riley. My daughter is Magnolia Rose Riley. She is four years old. She was diagnosed with autism spectrum disorder level one, late December, or late, I always say late 2021, but it was in December of 2021 when we got the diagnosis. She is a ball of energy. I always call her the nonverbal extrovert because she never meets a stranger. She always loves children, she loves to give everybody hugs, and she’s very much a people person and loves to be around other kids and loves to play. And just very, I guess not stereotypical of an autistic child.

 

Was it difficult to get a diagnosis for Magnolia since she doesn’t exhibit the traditional signs of autism? How did you know that she was different?

The signs that we realized is when she was 18 months, I had to babysit my niece for two weeks while my sister did a job training. My sister’s kid was four months old at the time, and she was babbling, babbling, babbling. Magnolia at the time was not babbling. And my husband and my elder son are both introverts. And unless you tell ’em something that gets them talking, they’re, you know, just quiet or whatever. 

So Magnolia wasn’t  babbling. She could sit and watch a Disney movie the entire time without moving. She would show interest in TV shows. She would just play quietly. She rarely cried. And so we just really just assumed that she was a very good baby. She wasn’t really having to respond to her name and stuff because she was the baby and my bonus son at the time, he was 16. So I mean, everybody catered to her needs. 

So we didn’t necessarily realize anything was different until we watched my niece for two weeks and my niece was trying to get our attention, trying to give us eye contact, responding, just doing different things and interacting with us. And I realized that my child wasn’t doing that. So we brought that up to the pediatrician and she gave us this little questionnaire. So we started speech therapy. While in the midst of speech therapy, my mom asked me, “Miranda, Hey, what do you think about autism?” And I’m like, “No, that’s not it.” One, I didn’t even really know what autism was at the time. And I remember going for a week straight of just watching TikToks, Instagram reels, YouTube videos, reading blogs and everything. 

I was reading about it. I’m like, this is my kid. Everything is spot on. And so I had what me and other parents have come to call, my moment of grief or my week of grief, realizing that my expectations for my daughter were going to be different than what I had planned on during the pregnancy and all that other stuff. One, I didn’t know what autism was, didn’t understand it. So I was scared. But after my little week, and while you’re in it, it’s big, but afterwards, but now being a year and a half, almost two years in this, I call it my little week of grief. But after that I started, I mean, I put my feet to the pavement and I ran with it. 

I asked her speech therapist, “Hey, what do you think about autism?” And she told me, she was trying to figure out how to approach me and tell me that she thought Magnolia might’ve been, might be autistic, because it’s one thing for us to see in our child, but these therapists, you know, they’re dealing with several kids so they know the signs. They see it. But having to tell a parent that this might be what’s going on with your child, you know, that’s a hard, I guess a hard situation or you know, something to deal with. ‘Cause you don’t wanna think that something’s different about your kid because you don’t want them to feel less than or anything like that. Or you know, you don’t want your kid to have to struggle or, you know, have anything really hard for them. But, you know, it is what it is. 

So once we started realizing, okay, she’s most likely autistic, what do we do now? We need a diagnosis. It took another eight months, eight to nine months, for us to get a diagnosis, which was very stressful. The waiting is the hardest thing in trying to get a diagnosis when you know that your child does not necessarily have what they need. Because I mean, it’s a disorder and you know, you wanna get her or him early intervention because early intervention is the best intervention. Like, you need these resources for your child but you can’t receive any because you’re waiting on a diagnosis. 

 

Many families feel overwhelmed with figuring out where to start when they realize their child is different. What resources did you use? Who helped you get the information you needed to advocate for Magnolia?

Steps that I needed. I’ll go ahead and say this, I am, I say I’m self-diagnosed ADHD, which I probably should just get an actual diagnosis. But once I get an idea or a purpose behind what needs to be done or something that needs like, okay, this is what my child needs. I’m going to, I won’t stop until she gets it. 

So I asked our pediatrician at the time, so what are our next steps? Who do I need to call? What do I need to do? She gave me a list of people. I called every single one and I was on every single list. That still was taking too long for me. So we paid out of pocket to a neurologist to get her seen, to see if we can get a diagnosis. They ended up giving her a diagnosis of myopic, and I might be saying that wrong, but it was like loose muscle tone because of her stimming and stuff. ‘Cause she did a lot of stimming with her hands and stuff, which she still does, but I’m like, that’s not what it is. Like she might need some physical therapy possibly, but I know it’s autism. So we again waited and I would call like, “Hey, do you have an opening? Hey, do you have an opening? Like we’re wanting to get tested.” And mind you, this is the, unfortunately this is the road or path that every parent who has a child that needs to be diagnosed has to go through this long process that takes forever for you to get some type of diagnosis, which makes no sense that we have to go through all of this. But, unless you’re a parent, my child needs this and I have to do this now and continue to stay on it, your child won’t be able to get those interventions that they need. So you have to be on it. And I thank God that I am that, I guess, parent who wants to make sure that my kid has what she needs as well as other kids, so. 

 

Talk to us about the Magnolia Rose Foundation and what inspired you to start your life’s work?

So, yeah, I am that Go-getter, right? That parent who sees the need and takes charge. So when Magnolia got her diagnosis, late 2021, I was looking for, I was wanting to be involved in the autism community or autistic community, however you wanna say it. So I was looking for a run or a walk because April is Autism Acceptance month, that’s also Magnolia’s birth month. So I was looking for something to be involved in. I’m like, we have to be involved in something. And that was the time when Covid was ending, but still technically kind of in Covid. So everything was virtual and I’m like, that’s not fun. Who wants to do a virtual walk? So I went to my mom, my family or whatever, and I was like, “Hey, I want to do a walk for Magnolia, a run walk for Magnolia because ’cause there’s nothing going on in Baton Rouge, Louisiana for autism during Autism Acceptance Month.” And if there was anything going on at the time, I could not find it. 

So my mom’s like, “well no, let’s just invite just a few family friends”. And I’m like, “Nope, I’m inviting everybody, anybody wants to come, they can come.” And so that was our first event and it was the first Rose Run. We had over 200 people show up for our first event. And my brother-in-law gave me the idea while we were preparing for the Rose Run or the first Rose run, just like Miranda, you need to start a foundation. Because I started having all of these ideas of what I wanted to do. And what I came up with was play dates because, and I go back, I guess, so our foundation is called the Magnolia Rose Foundation. So I mean, ’cause I named it after my daughter. What other name could I give it? But it’s the Magnolia Rose Foundation for Autism Acceptance because everybody’s aware right now it’s time to accept. 

 

Magnolia is four years old and will be starting school soon. What is your family doing to prepare?

About school. Magnolia is four. And technically she could be going to PK4 here. Because I mean, I guess I seem like, ’cause parents told me, “oh, you got it all, like, I guess figured out.” Just because I’ve started this foundation and everything and I go to all these different networking events about autism and everything. But when it comes to schooling, I am petrified. Only because I do not want my daughter to be put in a special needs class if she doesn’t need to be. And this is my opinion as a mother and with the current school system that East Baton Rouge Parish has, there are pockets of good special education classrooms, but for the most part they’re babysitting rooms. And I want my daughter to be challenged. I want my daughter to learn just like the next child. And just because she has, or just because she is autistic and is nonverbal, that should not mean that she shouldn’t be getting what everybody else is getting from my understanding with speaking with her therapist. And then now we’re gonna be hiring a tutor. Basically it’s, she’s a therapist, but she’ll be working on some other educational skills with Magnolia because I wanna get her prepared to be able to go to school. 

I will not be putting her in school until first grade just to make sure she is proficient enough. As far as communication goes, she does, she has a few words and they have been, she’s been developing some more, but they’re still not to the point where she is fully communicating like she would need to be if she was in a regular classroom. She does have an ACC device that she just received maybe a month ago. So she’s good at it, but she’s still not proficient enough where she would be able to use that and be able to communicate with her teacher and peers if she would need to be in a regular classroom, which is what we’re wanting her to be in. And if we can’t get her in, if it’s not that, we’ll most likely we’re looking at also this private school for special needs kids here in Baton Rouge. 

And I haven’t even got my daughter’s IEP done. I’m not even gonna lie to you. I just wanna be honest as a parent, like I just have been pushing it back and back and back and I need to do that. I need to get on it. Every other resource I make sure other parents have. And that’s one thing that I have been as a parent that I am procrastinating about. And it’s just because I don’t want my daughter to be… She already has a label on her, right. Our kids already have labels on them because they have a diagnosis. But I don’t want her to just be set on a shelf and never looked at again just because of the diagnosis. Because we have more resources now to help these kids be on the same level as other children. And Magnolia, like I said, she was diagnosed with level one. Her main sensory issue is the fact that she is nonverbal and she also has like tactile sensory issues. But other than that, like she should be able at, with some work, she should be able to be in a regular classroom. And that’s what why we are hesitant as far as putting her in school and getting her IEP ready. ‘Cause I want her to be in a regular classroom. 

 

You mentioned ABA therapy being helpful to Magnolia. What is ABA and how has it helped her acquire new skills?

So ABA, which is applied behavior analysis, that is a therapy that helps children who are nonverbal or who are on the spectrum or neurodivergent in general, that gives them independent living skills basically. And it helps curve certain behaviors that they do. ABA really had a bad, bad rep back in the day. And I was hesitant about putting my daughter in ABA because of the research and stuff that I had did before she got her diagnosis and even after, right after she got her diagnosis. And when the person who diagnosed her, well the doctor who diagnosed her said that we need to put her in ABA. And I’m like, “Well, I’ve heard some bad things about it.” 

But now, after she’s been in ABA for a year and a half now, and after speaking with her ABA and  her BCBA, which is like the supervisor (the person who has a Master’s in this) about my fears and stuff; and then doing more research, I was able to understand that–as with anything–change is good, right? So before how they had it was really, it was like a reward program that if the child was doing it, the child actually did something that they wanted them to do as far as a behavior. They would give them something as far as a treat or something. It was basically like training a dog. And if they didn’t do what they wanted them to do, they did not receive that. And so a lot of children, and those children are adults now, have behaviors that basically associate them doing something good with reward of food or whatever. So it caused more problems than it’s solved or whatever.

Now they have different ways of rewarding the child for doing the correct behavior. And they help, they do different skills. I’ll say this, when my daughter started ABA, she was two. When she was eating and she didn’t want something, she would just throw everything on the floor, just throw it all on the floor all the time. Within a month and a half of her being in ABA, there was no more throwing food on the floor. And we’re like, “Well what happened?” And they just literally, the way that they do things is they just slightly curb the behavior just so it can be socially appropriate. Now I say this from my experience with our therapist. 

My daughter goes to Dream Catchers LLC. Shout out to them because they are an amazing group of men and women who literally go above and beyond for your child. We have monthly meetings where we set up what I want them to be working on with my child. And after I tell them like, “this is what I would like you to see.” And they’ll say, “well, yes Mrs. Riley, this works”. Or “we really think that we should be working on this with Magnolia. What do you think about doing this? Like she’s excelled on this, so we don’t wanna do this anymore.” So it’s like, it’s a partnership in helping my daughter have more independent skills. They’re also helping her get ready for school. 

Even kids… and ABA also will go to the school with your child. And we have some schools here in EBR. They don’t let the schools or the ABAs go with them all the time, which that’s a whole nother story. But the rep that they had back in the past with these adults–who are now these autistic adults–that is not the same ABA that it is now, if I said that correctly. It’s not the same ABA, it’s completely different, especially the ones that who I’ve worked with, the different organizations that I meet with. ‘Cause I’m constantly going to different clinics to hand them out paperwork, constantly talking to different parents who have good stories about these clinics.

I hear better stories from the smaller organization as far as clinics go: the smaller ones. The bigger clinics that are like franchise clinics don’t necessarily hear the best rep from them. But the smaller ones, from my understanding, really work with the parent. They really work with the child. And you can see the love and the care that they have for these kids. The therapists that we deal with even come to our play dates to be with the kids. So they’re amazing people. They really have a heart for these children. And it’s not a babysitting service. They’re working with them. We have a therapist that comes to our house every Friday to work with Magnolia because we’re potty training still. And Miss Magnolia doesn’t like to use the potty at our house, but she’ll use the potty at the clinic. So every Friday the therapist comes and works with her on their normal things that they work with. And she gets Magnolia. Magnolia uses the potty at our house every Friday. And it’s like, we can just get her to do it every other day. We’ll be fine. But of course we can’t have a therapist there 24/7.

But these, and, but they’re so professional, they’re so patient, they’re so understanding with these kids because they are helping with their behaviors and the behaviors that aren’t acceptable in society because we are not a society that is inclusive unfortunately, like that, that we’re just not, we’re not there yet. So they’re helping to help these, so they’re helping these kids be able to acclimate to society and acclimate to being in a classroom with their peers and things like that. So I’m very grateful for ABA and I could not recommend them more. 

Exceptional Lives does not endorse ABA. Please read more about our perspective on this.

 

Any parting words?

I hope everyone can please follow the Magnolia Rose Foundation on Facebook as well as Instagram. We post our events that we’re doing, we’re on, you can find us at magnoliarosefoundation.org as well as magnoliarosefoundation.betterworld.org. And that’s how you can make donations and register for our events. I wanna continue to do the work that I’m doing, so hopefully we can gain your support. Yeah, thank you.

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. 

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