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ARP 009 - Parenting a Child with Autism with Maria Davis-Pierre, LMHC
69 Plays4 years ago
In today's episode, I have Maria Davis-Pierre, a licensed mental health counselor in the state of Florida to talk about all things autism. Today, Maria shares her experience in raising a child with autism, the reason for starting Autism in Black, Inc., and how she found out their eldest has autism. She also shares some tips for parents of kids with autism and how close friends and family of parents with an autistic child can help extend help to them.
Maria's channels:
Web: www.autisminblack.org
Facebook: Autism in Black Inc.
Instagram: @autisminblack
Twitter: @AutisminBlack
Connect with me via the following platforms:
Website: www.abovepreciousrubies.com
Twitter: @AboveRubiesBlog
Instagram: @AboveRubiesBlog
Facebook: @Above Rubies Blog
Maria's channels:
Web: www.autisminblack.org
Facebook: Autism in Black Inc.
Instagram: @autisminblack
Twitter: @AutisminBlack
Connect with me via the following platforms:
Website: www.abovepreciousrubies.com
Twitter: @AboveRubiesBlog
Instagram: @AboveRubiesBlog
Facebook: @Above Rubies Blog
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Transcript
Introduction to the Podcast and Guest
00:00:03
Speaker
Thank you for listening above Ruby's podcast, created by a mom for every mom and parents for that matter, embracing parenthood and sanity. Here to help you get by through weekly discussions and parenting, relationships, home and faith as you juggle daily in life.
00:00:25
Speaker
All right, everyone. I am back with another episode. This time I am with Maria, who is a president and a CEO of Autism in Black Ink. She's also the wife of Dr. Barry Pierre, my guest last week. Hi, Maria. How are you? I'm good. How are you?
00:00:44
Speaker
I'm okay. And as usual, good evening to you. Good morning to me. Yes. That time always is tricky to me. Yeah, it is. Especially now that you're on Daylight Saving, so we are 13 hours ahead.
00:01:01
Speaker
Yes. Okay.
Understanding Autism and Early Signs
00:01:03
Speaker
This episode will more likely talk about autism as I know a few people who have kids with autism, but here in the Philippines, not a lot of people understand or know about this. So I thought this is the perfect time to provide more education or more information about autism, what it is, and what to expect when your kids have autism.
00:01:26
Speaker
Now in a layman's term, what is autism, a spectrum disorder? So autism is a neurological disorder or diagnosis. So it impacts the brain and how we would see it, those who are not healthcare professionals, how you all would see it would be through sensory. Like if your child reacted to certain clothes or certain food items,
00:01:55
Speaker
and didn't like how it felt. There's another characterization called stimming. It's when they do something repeatedly like spin in circles. There's also the language communication. So there may be a speech delay.
00:02:13
Speaker
comprehension, not quite understanding what you're trying to convey in a conversation, especially if they don't have an interest in it. So there's many things that would on a spectrum. So for instance, with my daughter, things that she may have somebody else might not present with. So it just depends on that particular individual and what their characteristics of autism are.
00:02:43
Speaker
And when did you realize your daughter Maria may have autism? What have you noticed that made you think that maybe it's about time to check whether or not she has autism? Yeah, so at about six months, I noticed there were some sensory
00:03:03
Speaker
uh, characteristics with Malia and they kind of clued me in like, okay, this may be autism. Um, but Dr. Berry was very adamant that I not diagnose his, his child. I left it alone.
00:03:20
Speaker
But at 10 months, she actually regressed in her speech. So things that she was saying, like mama, dad, dad, ball, all, you know, simple words that were developmentally where she should be, she actually forgot all of those things. And when trying to get her to say them, it was if she just couldn't. And then I also thought she was deaf because loud noises would occur and she wouldn't have any reaction to that.
00:03:49
Speaker
Yeah, so that just let me know that, you know, okay, we do need to get her checked out. Is that always how early a parent can determine that their kids may have autism or that's not always the case? So, health care professionals can catch it that early and diagnosis that early, but usually parents are going to notice parents who don't have any kind of medical background, any mental health background,
00:04:17
Speaker
They're going to catch it, you know, catch these characteristics around two or older because that is the stage where children have a burst developmental wise. So they're, you know, having strings of words that they're going to be saying. So you'll notice if there's a delay in the speech at that time, right? They're going to be doing things developmentally at that time. And that's why you're going to be like, oh, okay. They're not hitting these milestones. So that's probably a parent who didn't have
00:04:46
Speaker
a background would know. How many parents are trying to deny that their kid may have autism? What do you think should they do in that case? Do we have any percentage of those who are in denial that their kids may have autism? I don't have any exact percentages on denial. I think it just varies by the parent because those statistics
00:05:17
Speaker
aren't necessarily things that medical professions are looking at.
Challenges in Minority Communities
00:05:21
Speaker
So they're more likely looking at a gap in diagnosis, or how long does it take a child to get a diagnosis. But I think there is a large amount of
00:05:33
Speaker
a denial, especially in minority communities, because we don't get the information like other communities do. So other communities will know what autism is and characteristics of autism and what to do if they believe that their child is autistic. While minority communities, specifically in the Black community that I deal with, we don't get that information
00:05:58
Speaker
we get the wrong information. So it seems quite scary to us when somebody will say autism because we don't have the right information. And that can lead to not wanting your child to get a formal diagnosis or get a diagnosis, which then leads to a gap in the services.
00:06:18
Speaker
Yeah, that makes sense. And speaking of that, what prompted you to start Autism in Black, which I think you've somehow answered already, but walk us through that. What's the birth of autism in black?
00:06:33
Speaker
Autism and Black came about because it did take us a long time to get Malia's diagnosis. And I am a licensed therapist. I'm a clinician. And then of course, you know, I'm married to somebody who is a physician. And it was us having education and resources. It still took a long time
00:06:54
Speaker
to get Malia her diagnosis. So I was thinking about those in my community who don't have the education and the resources and how they go about getting diagnosis. And then when we got her the diagnosis, we had a lot of health care professionals coming into our home and not taking our culture into consideration. They were just trying to apply what they learned in their textbooks
00:07:18
Speaker
to us without thinking about how our culture can impact their treatment planning. And I saw that this was more of a norm. And then when you go on any autism sites, I don't see anybody that looks like me. I see mostly white people. And to me, I couldn't relate to that. So it made it seem as if autism was just for white people when we know it's not.
00:07:41
Speaker
So I wanted more representation. So I created Autism in Black for Black parents who have a child diagnosed with autism. Yeah, which is a really good channel for your followers because it's very helpful. I've learned a thing or two from there as well. Well, you know, helping you with your podcast. If not for Autism in Black, I wouldn't have known that there are a few paperwork that need to be done and all that legal stuff.
00:08:09
Speaker
In the background, I'm not even sure how it works here in the Philippines. So that's really good that you're reaching out for your community to learn more about it. What do you think are the challenges of raising a child with autism?
00:08:26
Speaker
I think for minorities, it's representation, so having somebody understand our culture. I'm sure those living in the Philippines could understand that as well, that the access to healthcare resources, having that access to certain things, we don't always have that.
00:08:48
Speaker
There's certain things in place that keep us from accessing resources. There's also a lot of evaluator bias because the health care system, mental health system in particular, is pretty whitewashed. The DSM, which is the book that we use for diagnosis, it was created by white men on white men. If you're not white, you may not meet or
00:09:16
Speaker
have the characterizations of what they're saying in that book. So it's going to look different for us. So that leads to a lot of misdiagnosis, not getting the right diagnosis.
00:09:32
Speaker
not getting any diagnosis. So there's so many things in play when it just comes to getting the diagnosis. Then we start talking about access to resources and access to therapies and understanding. And that's even harder to think about.
00:09:51
Speaker
Exactly.
Family Dynamics and Advocacy
00:09:52
Speaker
Now let's talk about Malia because I know she is, she plays tennis and is very good at that. In fact, one time Dr. Berry said you were going somewhere and she was going to meet Serena. Yeah, we went to the US Open last August and we got to see Serena. We didn't get to meet her, but we did get to see her play and that was a big deal.
00:10:22
Speaker
I bet she had really a great time. She did. She's very active in sports and has a natural talent at it, which she does not get from either me or her father.
00:10:35
Speaker
And that's what I noticed, kids with autism, they really have this special gift that is just amazing. Aside from her gift in tennis, what special gifts does she have? You know, I think any child who is autistic, whatever their interest is, is what they're really going to put all their focus into.
00:10:57
Speaker
So from Malia, that is sports. She plays tennis, she plays soccer, bowling, basketball. She is quite active, but she enjoys those things. So she puts a lot of effort into those things. There are some kids who enjoy learning about
00:11:18
Speaker
science or learning about math. Maria loves science as well. She loves science experiments. So she loves doing those type of things. So whatever that interest is, they put a lot of focus into those things because it's something that they're interested in. Ah, that's awesome. So that is why they become really great at it. So it's like an interest led then. Let's talk about the twins. How older is Maria?
00:11:46
Speaker
And then our twins, Davis and Brooklyn, are five. Yeah. Do they realize that Malia has autism or do they have to understand that at an early age? If yes, how can the siblings of kids with autism better understand them?
00:12:03
Speaker
So I think for the twins, they don't quite notice anything right now. Although we are very vocal about autism in our household, of course, with me being the face of autism and Black, but I don't think they quite have an understanding yet.
00:12:22
Speaker
of course when they're older and they have questions or as you know if they have questions next week we'll have sit down and have you know talk with them on their level but as of right now they're they don't really they just you know that's my sister and that's yeah I know um but for a lot of siblings especially if it's older siblings yes you know they are
00:12:44
Speaker
of course, you know, they're going to, because they're older, their comprehension level is, you know, they're going to understand and know, and parents have to have conversations with their, the siblings, because a lot of times they're left out and they're, you know, when you have a child with a disability, a lot of spotlight goes onto them. So your child could be feeling left out. They could also be feeling like, you know, they need to be, you know, just as protective or they need to be in a parenting role.
00:13:13
Speaker
There's so many avenues that a child can go on based on what's going on in their household. And I think a lot of times it is a lot of pressure put on them to
00:13:28
Speaker
I have to make sure that I'm doing everything right because my dad had to focus on my sibling and make sure everything is good with them. So the least I can do is not put any added stress. And I think sometimes that just puts a lot of stress on the children and want them to be children.
00:13:48
Speaker
So, you know, it takes a lot to manage and balance having multiple children without disabilities. When you add in disabilities, you know, it gets even harder. So, you know, parents have to give themselves some grace, but also be able to have intentional time with each of their children. So the child who is autistic and the child who is not autistic.
00:14:13
Speaker
I agree. That is so true. Now, how challenging was it for you? Or did you have a hard time taking care of Malia? Or how did that look like for you and Dr. Berry? So with Malia, no. We didn't have a challenging time. I think for a lot of parents where the frustration comes in is that dealing with other things like dealing with schools, dealing with health care professionals.
00:14:42
Speaker
I mean, if your child does happen to have some maladaptive behaviors, then of course those things can be difficult, but Malia doesn't have any maladaptive behavior. So for us, our frustration came with dealing with the schools and trying to make sure that she's getting a quality education or dealing with a therapist who believe that she should have these interventions when it's like, no, we're telling you that that's not working.
00:15:09
Speaker
So just dealing with those avenues is what the frustration came in for us. There's a different kind of frustration than in that case. I wonder why that's one of the topics in one of your episodes. Yes, it's out of your control. You don't have much that you can control with it. And with the school system, it gets very difficult here in the United States because they have a
00:15:37
Speaker
IEP plan that they have to go by and make these goals. And then sometimes they're just not good plans that they give the children. So it makes it more difficult to access a quality education.
Advice for Parents and Support Networks
00:15:50
Speaker
Exactly. Now, if you were to give an advice to parents of kids with autism, what would it be, especially those who just started to notice their kids may have autism?
00:16:02
Speaker
It's give yourself some grace. One thing that parents do when they get that diagnosis is they go right to Google and they put autism and you get so many hits. You get so many different opinions and then you start to think, am I doing it right? Am I parenting it right? And you have to
00:16:23
Speaker
you know, take some of the knowledge, but also trust your parenting gut because, you know, those experts aren't living with you in your house. You know, therapists usually only see your child for a certain amount of hours a week. So they're not getting everything that you're seeing. So, you know, you have to understand that you are the expert with your child as well. And you have a say so and you need to trust your parenting gut.
00:16:51
Speaker
That's a good one. That's a good takeaway. Because sometimes you just think that when you are with a doctor or a professional or someone who is trying to evaluate you, not only for autism, but especially with your kids, especially us who are in the non-medical field, we think that whatever they are telling us is what's correct and what's true. And sometimes it's not. Yeah, because they're not getting
00:17:20
Speaker
the entire picture, which is why we have a high rate of misdiagnosis within the black community when it comes to autism, because they're looking at it from one way. So you have to, you know, had it been for, you know, us listening to doctors, Malia would have got a diagnosis at a later time, you know, we had to advocate for her. So, you know, do what you have to do for your child and don't let anybody else try to make you feel bad or otherwise, because
00:17:50
Speaker
exactly how you're parenting your child. And it's always that it's always a case-to-case basis. How about friends who are like us of people with friends that are parents of kids with autism? How can we understand them or the family even more? And how can we extend help without having to sound judgmental or having to like be judgmental to the family of kids with autism?
00:18:18
Speaker
You know, this is a question that I love because families, you know, and friends, they're well-meaning, you know, so, you know, they want to help. And a lot of times, the first thing family members and friends do is they go to Google too. And then they want to, you know, educate you as the parent on what you should be doing. And a lot of times that just adds extra stress.
00:18:44
Speaker
because there's so much information out there. So what I tell family members and friends is that, you know, listen to the needs of your family member or friend. What they need you to do, that's who you should be for them. If they just need you there to vent and talk to, then that's, you know, the role that you should take. If you want to learn, of course there are books out there,
00:19:09
Speaker
But you can also ask questions. And if that family member wants to educate you, then they will. But be careful about the knowledge that you are receiving from outsiders and then going to present that to that person and be like, well, this is what you should be doing. No, that's not what we want to do. We want to be a helpful resource.
00:19:32
Speaker
be a good support system. And sometimes it does get uncomfortable in having conversations. So you say things when you start to get uncomfortable. Like if I say, oh, my child is autistic, a lot of people are like, oh, I'm so sorry. There's nothing to be sorry about. This is not a terminal illness I'm telling you that she has. So there's nothing to be
00:19:56
Speaker
sorry about, you don't need to feel sorry for us. So it's just things like that that can be stressful and hurtful.
00:20:06
Speaker
Yes, exactly. And most of the time, these friends and family do not even mean that. It's just that they don't know. I guess we also do not know how to react to it and what the right words to say are. So it's very important to give out the right help. That the family needs. Exactly. So sometimes it's just, okay, can I do anything for you?
00:20:36
Speaker
Um, you know, cause a lot of times we, it's hard for us to ask for help, especially when we're talking about our child who has a disability and we're working so hard to, you know,
00:20:46
Speaker
get them to make progress in certain areas and then have somebody come in and mess that up, you know, it gets a little difficult. We don't want to necessarily ask for help a lot of times, but sometimes it's just being there. Sometimes it's just bringing a meal. Sometimes it's just saying, hey, you know, you want to take a nap for an hour, watch your child, you know, things like that.
00:21:08
Speaker
Wow, that's really good. If there's one takeaway I'm bringing with me, it would be, do you need any help? That's all I should say. That's all I should say. I don't really have a family member yet, but I have a few friends and online that are parents of kids with autism. And I want to be very sensitive for them that whatever I say,
00:21:30
Speaker
will not sound offensive. So that's a really good advice right there. Yeah, because many people get offended by different things. So something that would offend somebody else is like the term autistic versus person with autism. For me, we use autistic
00:21:49
Speaker
that may offend somebody else, another parent, but it doesn't offend me. So just understanding what language they use and understanding where they're coming from so that you're not offensive to them personally, but knowing that it's different for everybody. Yeah, exactly.
Global Advocacy and Resources
00:22:07
Speaker
And of course, congratulations to Autism in Black, featured a few times already. What is the goal for Autism in Black? You know, we're trying to be worldwide with our advocacy and empowerment.
00:22:23
Speaker
for Black families because it's just the information is scarce out there for us. The representation is scarce out there for us. So that's what we're trying to do. Go global with the mission of spreading awareness, acceptance, empowering parents to be able to get rid of the shame associated with having a child with disabilities, as well as training organizations to be more culturally responsive when it comes to the Black disability community.
00:22:54
Speaker
That's awesome. Most of my listeners are Filipinos. If they want to learn more about Autism in Black or follow you, how can they do that? So my website is autisminblack.org. And on Facebook, I'm Autism in BLK. And on Instagram, I'm Autism in BLAKK.
00:23:15
Speaker
And I'll also send in your links in the show notes so they should have that available if they want to learn more about you and Dr. Berry as well. Thank you so much for your time today, Maria. Thank you for having me. I really appreciate it.
00:23:31
Speaker
Hope you enjoyed today's episode. Sign up to my newsletter so you're notified of my next podcast at www.abovepreciousroobies.com or follow me via Apple Podcast or Spotify. Today's Bible reading is from Psalm 127, verses 3-5. Behold, children are a heritage from the Lord. The fruit of the womb is a reward. Like arrows in the hand of a warrior, so are the children of one's youth.
00:24:00
Speaker
Happy is the man who has his quiver full of them. They shall not be ashamed, but shall speak with their enemies in the gate.