Friday, May 24, 2024

Rochelle Johnson Didn’t Know Anyone With Autism. Then Her Son Was Diagnosed.


To her followers (more than half a million and counting between Instagram, TikTok, and YouTube), Rochelle Johnson is synonymous with style. The content creator launched her fashion blog Beauticurve back in January 2013 as a “designated safe space for plus-sized women.” Over time, it — along with Johnson’s rapidly growing social media family — has expanded, now covering travel, beauty, and life in general.

And, for Johnson, who has built her online community on authenticity, sharing her life now meant opening up a very personal part of it: her family’s journey since learning her son Creed, 7, is on the autism spectrum. Just as she’s carved out a safe space for plus-size women, Johnson knew she wanted to position her platform as a safe space where mothers navigating autism could support one another.

As Autism Awareness Month draws to a close, Scary Mommy sat down for a Zoom chat with the kind, relatable, and empathetic content-creating mom of two.

Scary Mommy: What was your family’s journey to receiving Creed’s diagnosis like?

Rochelle Johnson: We noticed some regression when he was about 18 months old — just not waving or speaking anymore. I think Mike [Johnson’s husband] and I were separately investigating, just trying to figure out what was going on. We both kind of came to the conclusion, Could he be autistic?

We didn’t know anybody else that was on the spectrum, so it was kind of a new thing. But thankfully, we were on top of it early. By the time he was 2, we had him evaluated by our local autism specialty center; that’s where our doctor sent us. He was diagnosed as a Level 3, which they consider as needing substantial support.

SM: What does that look like for Creed?

RJ: He’s technically non-verbal; he speaks, but he has limited communication. I say he’s non-conversational because he can say, ‘I want goldfish.’ And, ‘I want soda.’

SM: After the diagnosis, what was your next step?

RJ: Early intervention is the best thing, so we started therapies. Just teaching him to do things that other kids might learn more naturally, like putting your clothes on, even potty training — just these things that he needs extra help with. So he started developmental therapy, of course, speech therapy, and occupational therapy because sometimes your motor skills are just not as strong.

SM: How wonderful that you have an autism specialty center in your area… I know a lot of parents find it hard to even get a diagnosis without that type of facility nearby.

RJ: And the ones that are available, there are long waiting lists. We had to wait six months just for him to get a diagnosis, and you can’t move on to other therapies like ABA [applied behavior analysis] until you’re diagnosed. So, it’s just a long process.

SM: As mothers, we are so protective of our babies, and there’s always this fear that they might get hurt if we share them with the world. What were you and Mike’s conversations like in deciding to reveal this part of Creed with your followers?

RJ: Because we didn’t have much support or know many people who experience autism, I think we were just looking for a community of people who were going through the same things. And honestly, it was the best thing, besides early intervention, that we could do.

SM: Have other moms reached out to share their stories with you in response?

RJ: Yes! Tons of moms and grandmas. Actually, when Creed was entering kindergarten, I was trying to figure out what school to go to, and I was just like, I have no idea. I don’t know anybody around here who has a child on the spectrum and lives in my area. So, I just picked the closest school because I couldn’t find any info.

One of my followers reached out and was like, ‘I live in the same area. We’re going to this other school that’s also close by.’ I said, ‘OK, well, let’s compare notes after a while,’ but I couldn’t remember her name.

Then one day, I was at Target, and she came up and said, ‘I’m the one who reached out about the school.’ At that point, it had been a whole year, and we really wanted to get him out of the school he was in. She was like, ‘Yeah, the school we’re in is great, the teacher’s great.’ So, now they’re actually in the same class.

SM: That’s so amazing!

RJ: Yes, it’s been the best thing ever because the school is just so much better. And I would’ve never known if I hadn’t reached out to my community about it.

SM: Oh, I love that. You’ve mentioned lessons you’ve learned along the way. What stands out?

RJ: Number one, early intervention is the best way to go about it, and you can’t be afraid to just approach it head-on.

It seems like now that we have shared that Creed is on the spectrum, so many more people have been coming up to us, even family members, and they’re like, ‘Oh, I think my child or grandchild is on the spectrum.’ … And I say, ‘You need to go talk to your doctor, tell them your concerns, and see if you can get them in different therapies and stuff, even if they’re not autistic.’

We tell them, ‘Don’t wait. I know it’s hard, but you just have to do what’s best for your child.’

The other thing I always tell people is, ‘You already have, on the inside, what you need to handle this.’ Even though it’s something you might not be familiar with, I feel like, as their parents, we already have the innate ability to handle whatever comes across our plate.

SM: As you’re figuring all of this out, there’s also the task of helping friends and family be there for Creed in the ways that best support him. Has there been a learning curve there, too?

RJ: It’s definitely been a learning curve for everybody. We just try to educate, gently, about different things he likes. ‘He might not want to give you a hug, and that’s OK. Just give him a high five.’ That’s kind of like a hug for him; if you put your hand up, he’ll give you a high five.

I think, just naturally, people want children to say things a lot. Like, ‘Say this, say that.’ And we’re like, ‘OK, he can’t say that right now, or he doesn’t want to.’ Some things he can say he just doesn’t want to say, and it’s just part of autism. We just try to find other ways that he can communicate with them, like the high five thing. That is how we’re communicating right now.

I feel like everybody has adjusted really well … everyone has just accepted him, and they’re like, ‘OK, that’s just Creed.’ And it is; it’s just Creed — he’s going to do it his way, and that’s fine. It doesn’t have to be the traditional way or the way that you’re used to. He can do it his way. So I think, just reminding everybody of that.

SM: You also have a daughter, Evan, 2. How do you and Mike hold space for what Creed needs while also making sure little sis feels special?

RJ: They kind of have their own paths. Creed, for the most part, likes to do his own thing. I mean, he’s 7, so he literally does his own thing, and a lot of times, he doesn’t want to be bothered. Evan likes a lot of attention and affection.

But whenever one does want to play with the other one, it’s really funny because sometimes she’ll get really angry and be like, ‘Oh, Creed, leave me alone,’ and he’s just laughing. I love that because I feel like it’s such a normal sibling relationship. Even though they have a communication barrier, I feel like she understands him. It’s really beautiful to see.

SM: What advice do you have for other parents who want to have conversations with their kids to help them better understand so they can be inclusive and kind?

RJ: There are lots of resources you can use to help your child understand. Recently, my friend asked, ‘How can I help my son understand Creed?’ I told her, ‘There are Daniel Tiger episodes!’ Then, when I was looking up the episodes, I found that PBS has a whole list of shows that talk about autism to help children understand. So, that’s a really great resource that I’ve already used.

JS: I don’t think people always realize how much goes into creating content. How do you balance that with being in this season of parenting?

RJ: I try to balance the best I can, but I don’t know if anybody really has it down pat. I feel like it’s the one thing that it’s just so hard to do. I just try my best, and I am trying not to be hard on myself. I’m like, ‘I can only do what I can do. I can’t do any more than that.’ That’s kind of my motto for everything.

This interview has been edited and condensed for clarity.





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