Refrigerator Moms

[Kelley Jensen] (0:07 - 0:34)
Hi, I'm Kelley Jensen, and I'm here with Julianna Scott, and we are the Refrigerator Moms. Today we are doing some cold hard truths, and we're going to be doing a cold hard truth about gene site testing, parenting instinct, which is a loaded topic, autistic joy, which is a lovely topic, of course. But before we get to that, we had some feedback on the medication episode, some follow-up questions.

What were they, Julianna? Yeah.

[Julianna Scott] (0:35 - 0:41)
Well, one question that gets asked a lot is, when is too young to medicate a child?

[Kelley Jensen] (0:42 - 1:41)
A great question, not answerable on social media. That's the first thing I would say. Do not...

People try to answer it. And they are free to give their opinions. They're free to give you their experience, what they've done, but remember, you don't know these people.

They don't know you. They don't know your family. They don't know your child.

So never take advice from social media, which oddly is something you could do now. You could decide that you're going to do the medication that was done by a social media comment and then find the pills at some offline or some nefarious way. We obviously don't recommend that.

But the problem parents have is that doctors are dismissive, right? You don't want to do that. Or they just don't know.

You should be persistent, but you do have to go through your doctor and ask questions and have specific goals in mind. When my child, I had a very specific goal that I was having a very difficult time teaching him to read, and that sort of guided the conversation and was unignorable by the physician.

[Julianna Scott] (1:41 - 3:47)
Right. And that's when I did a little poking around to see what kind of advice people were giving on social media. First of all, again, it just underscored what you just said, that you can't really get advice because, again, every child is very different.

But largely what people were saying, sharing their own stories, and that's where you kind of can get some information. The stories usually report that it's some behavior that is a tipping point. So it's when you have, whether it's protracted meltdowns, or if it's impeding learning.

Or sleep. Or sleep. Something that you can't address behaviorally, and you need some extra help.

That's when to start looking, and it could be at any age. Any age. So, gene site testing.

That also came up. We didn't talk about that in our episode on medication, but I was thinking about it later and thought that it has been a very valuable tool for us. And I know you've done the same, although we have the same psychiatrist who helps both of our boys.

So not a surprise there. But gene site testing, for those of you who haven't heard about it, it's testing done that analyzes a person's DNA to help predict how they might respond to certain medications. It doesn't suggest specific drugs.

It just gives you information. On how you metabolize the medicine. Right.

So for example, for my son, we got information that he might need more medication than the average person because he metabolizes it a different way. So that's really helpful to know. And he also, the way he metabolizes some classes of drugs eliminated a whole group, which we were wondering why for years we were on, he was trying certain classes of drugs and they weren't that effective.

Well, there's a reason. And so it can really help. It's a little bit of a cheat sheet, at least where to start.

[Kelley Jensen] (3:47 - 4:12)
And not just for the drugs that might be effective for managing symptoms of autism and behavior, but I remember insisting that my son couldn't be on amoxicillin if he had some sort of a bacterial infection because it did nothing. And gene site testing helped me determine no amoxicillin. That was really a great thing to have.

[Julianna Scott] (4:12 - 5:19)
And honestly, in such a blurry area, so much trial and error goes on. Any information like hard data and hard science that you can get to help make those decisions is so welcome. I know the ones that we did, it was through GenoMind.

I was reading that gene site is another one. So they're coming up and I think they're pretty accessible. And talk to your child's doctor about doing that.

And I know for my son, now that he's now out of the state and had to find new psychiatrists, he takes that report with him and shares that with his psychiatrist. And it's always been helpful. This episode of Refrigerator Moms is brought to you by Brain Performance Technologies.

Brain Performance Technologies is a specialty mental health clinic that offers magnetic e-resonance therapy, or MERT, for autistic people age three or older. MERT is a transcranial magnetic stimulation protocol that utilizes an EEG diagnostic to deliver personalized magnetic pulses to stimulate the brain and build neural pathways effective in managing autistic symptoms.

[Kelley Jensen] (5:19 - 5:57)
Okay, so parenting instinct versus parenting skills. This is something that comes up a lot. And I know you have had this experience.

I certainly did when my son was first developing as a young toddler. I had the nagging feeling that something was wrong and I couldn't shake it and nobody believed me. They kept kind of dismissing me because physically he was ahead of schedule, right?

He was just a boy and there's nothing to worry about. He's going to outgrow this or he's just slow to learn to speak. And my instinct kept telling me differently and that served me, that parenting instinct.

But it can get muddled, can't it? It can.

[Julianna Scott] (5:58 - 7:05)
So parenting instinct is really that natural, the gut feeling we have as parents. So it's the built-in protectiveness, responsiveness, the bonding, all those things that really come from our own experiences, our upbringings, our personalities. But it is just that it's the gut natural instinct.

So obviously really important to parenting. I think my gut instinct came into play... Well, it was funny because with my son, he was premature.

So he wasn't hitting developmental milestones. So that right there wasn't necessarily a red flag for us because he was a preemie and he wasn't supposed to hit those developmental milestones. It wasn't until right around two where we were thinking, oh, okay, maybe he hasn't caught up.

Maybe there's something else going on. And it's really important. It's like, I think those instincts raise red flags.

But like you said, you don't stop at the parenting instinct.

[Kelley Jensen] (7:06 - 7:34)
No, because your instincts are not infallible. It's crucial that you recognize sometimes they're influenced by stress. Sometimes with misinformation, that is particularly prevalent today when you go into your silo and it's telling you something that reinforces a stressor that you're having is certainly your personality, what you want to be true, your own personal bias.

So you start with what that little voice inside your head is telling you, but you don't end there.

[Julianna Scott] (7:35 - 8:44)
No, you've got to follow it up. And that's where developing the skills comes in. So I think a lot of people are just parenting on gut instinct.

And especially with our kids, you do need to layer in some of the acquisition of skills. So through education, observation, trial and error, all the things that takes practice. We've talked about this a lot, especially because we've been looking at social media and there's a lot of gut feeling out there.

And the instinct there is to reach out, but they're reaching out to get that reinforce their personal bias versus reaching out to get like real information to then make your own decisions. So when we talk about decision making for determining action, we have kind of put together a list, a chronological list, a numerical list of how you can go about and how we go about making our decisions. So we will share that with you.

So give me the first one. The first one is easy. What's the issue?

That's the red flag, right? That's the red flag that you get from your parenting instinct.

[Kelley Jensen] (8:45 - 8:45)
Okay.

[Julianna Scott] (8:45 - 8:56)
There's an issue here. What is it? Right.

Easy. Two is what you're doing currently working. So if your kid is having meltdowns is what you're doing working.

[Kelley Jensen] (8:57 - 9:33)
Well, and just follow up to that. How long have you tried what you're doing and what you're working on and how consistent are you with the implementation? You know, I can't say enough about this.

We're kind of living in the instant gratification time and you got to give it a little longer. And there are days when you feel like you're failing. That said, if you really are not seeing any progress or it's leading to too much frustration for your family, then sure, try something different.

But consistently and patiently and with the... You never want to do a short-term solution to a long-term problem. Right, right.

[Julianna Scott] (9:34 - 11:05)
Another thing to consider is, is this right for you and your child? And your family. And your family.

And this one comes up a lot because sometimes you're not in this alone. So you've got a partner and it's, is this right for your family? Often, I know we've talked about this, my husband would...

I was always like jumping on every idea. Yes. And he was like, whoa, whoa, whoa.

Like, let's think about this. And then he had his own process to go through, kind of similar to this one. He wanted to do his own due diligence and figure it out.

And also to say, okay, you know, what is involved in this? And do we really want to take on, you know, the financial or time burden that it might impose? So those are all things to think about and factor in to the decision-making.

Absolutely. And all right, well, then tell me about autistic joy. I wanted to talk about this because a new study came out.

It was limited, 86 participants. But the new study asked, what brings autistic people genuine joy? And this was kind of, in some ways, charming.

Maybe that's not the right word. But there's this misconception that autistic people are always unhappy, that they're always struggling. And it's just not true.

And this study underscored that it found that many autistic people not only experience joy regularly, but often find deep happiness because of, rather than in spite of being autistic.

[Kelley Jensen] (11:06 - 11:21)
And they spread joy too. I mean, you know, there is nothing more charming, for lack of a better word, than a young person that is so enamored of their special interests that they are without a care in the world to share it, right?

[Julianna Scott] (11:21 - 12:51)
Yes, yes. So a little of the data from this study. So 94% agreed that they actively enjoy aspects of being autistic.

And that's lovely. 80% believe that they experience joy differently than non-autistic people. So that's what they're saying.

About 95% reported often getting totally absorbed in enjoyable activities and were satisfied with repetition. I think we can all understand that. We've all witnessed that.

And about 93% of the participants rated pursuing passionate interest as an important source of joy. And these weren't just hobbies, but powerful sources of happiness and energy. I know I can relate to that, especially because some of my son's special interests developed into what he wanted to study in college, and then now what he's working in.

So really, special interests at a young age can really serve them well. They can become experts. And so, you know, and it's great.

I mean, I'm sure when he was little, I was thinking like, I don't know if his interest in Pokemon and Star Wars is going to translate to a job. And he's not working in Pokemon or Star Wars. But his other special interests, yeah, I mean, it did serve him.

And I think he takes a lot of satisfaction from being able to have that translate into a professional life.

[Kelley Jensen] (12:51 - 13:24)
I mean, Beau certainly had the whole lawnmower. I would have never got him to read without the assistance from the strong desire to look up lawnmowers on the internet. And so that was wonderful.

But I think it's important to know that there's a tipping sometimes lawnmowers bring us so much joy. It's pure. We can call up and ask what kind of lawnmower you have.

And that sparks a conversation that people find utterly charming. And it is. He doesn't like my lawnmower, by the way.

But then we would have meltdowns. You do have the wrong lawnmower.

[Julianna Scott] (13:24 - 13:25)
We have the wrong lawnmower.

[Kelley Jensen] (13:25 - 13:26)
It's battery powered.

[Julianna Scott] (13:26 - 13:28)
Apparently, that's just no good.

[Kelley Jensen] (13:28 - 13:31)
No way, man. It's got to be gas. Come on, Julian.

[Julianna Scott] (13:31 - 13:32)
I know, I know.

[Kelley Jensen] (13:32 - 13:58)
Give him his due. But then we would have tremendous meltdowns when it rained. We'd all be, oh, please don't let it rain.

Please don't let it rain because the lawnmowers couldn't come out. So that's sort of an example of, yes, there is autistic joy. But then that leads to the rigidity of that joy.

And that's the learning process, right? So it all goes together. Autistic joy and the rigidity of autism, they kind of go together, don't they?

[Julianna Scott] (13:58 - 14:28)
They do. But also what was interesting is that in this study, they found that the joy happens when the environments are sensory friendly, supportive, and they don't demand masking. And that's the other thing they were saying is that some of the steepest barriers to that autistic joy was because of non-autistic people, like bullying.

Yes. And people saying that they need to stop stimming or things like that.

[Kelley Jensen] (14:28 - 14:29)
Yeah, yeah, yeah.

[Julianna Scott] (14:29 - 14:32)
And so we need to be more tolerant of those.

[Kelley Jensen] (14:32 - 15:09)
Well, I remember when he was in school and he certainly wasn't the only one, you know, sometimes the childhood friendly, the Barneys and the whatever the cartoon of the moment was, you know, that stuck with him for a lot longer. And I was always fighting, that's not age appropriate. So he wouldn't at the school or even some of the therapists wouldn't want him to do things that weren't age appropriate.

And I came down hard on that because if it is autistic joy, you let him have that five minutes for his break where he is focused on whatever brings him joy. It doesn't matter, right? Who cares about being age appropriate or not?

[Julianna Scott] (15:09 - 16:05)
I do feel like there's a little bit of progress that has been made with that. And I do love seeing, you know, we've talked about love on the spectrum before and there is one woman, I love her on there and she's really into the tea and she's all about it, talks all about it. And on that show, they really do highlight special interests as something positive.

And with her in particular, that was a deal breaker with anyone that she met to date is they had to, at the very least, accept that she was so into it. And she found a wonderful girlfriend. I think they're still together.

And, you know, she's also participating in her, I mean, I don't think she's into this into the tea as her girlfriend, but enjoys it too. And I think that we've experienced that too with our kids. I don't know if you, I don't think you're as into lawnmowers as much as Beau.

[Kelley Jensen] (16:05 - 16:07)
Well, no, but I certainly have appreciation for them.

[Julianna Scott] (16:07 - 17:41)
I never had before. I certainly, with my son's special interests, have participated in that joy and learned things that I then learned to enjoy. In fact, there were some special interests that he got into that I was kind of bummed that he would cycle through some special interests.

He was in a birdwatching phase. Do you remember the birdwatching phase? No, but that was lovely.

It was, we would go all over the place looking for, you know, in Northern California, looking for these birds. And we created a little book and we would take pictures and we would do all these things. And I was just, at first I was just like, oh, this is just too much outdoors for me.

I'm not enjoying this. But then I kind of got into it. I mean, it was kind of, you know, I kind of wanted to see how many birds we could find.

And then he just abruptly kind of stopped the birdwatching. I was a little bummed. And then we went into cake decorating phase.

Oh, that was my favorite. Yeah, we did a lot of cake decorating. We could not eat all the cakes we made.

So we were definitely delivering cakes. And actually, it was really cool. We found a great organization that works with foster children and they could request certain decorations and things like that.

So we would sign up probably weekly to make a cake. And we could, you know, we did some great animal cakes. We did, I think we did a Star Wars cake.

We did all sorts of things. Well, and so it was a win-win. So he didn't necessarily need to eat the cakes.

He just wanted to decorate the cakes. So we got very good with gum paste and fondant.

[Kelley Jensen] (17:41 - 17:42)
Yes, you did.

[Julianna Scott] (17:42 - 18:08)
And then it was over. And then it was over. I know.

In fact, I sent him a message the other day that there was a new Pokemon out. I read somewhere. And he's like, oh, I kind of forgotten about Pokemon.

I said, are you kidding me? How could you have forgotten about Pokemon? It was such a huge part of our lives.

But autistic joy is wonderful and real. And should be celebrated. And absolutely.

[Kelley Jensen] (18:08 - 18:31)
And it's also a teachable moment. So if it... And encouraged.

If your child has real joy and there's some sort of a barrier because of the rain in our case, or it's still a teachable moment. I think we had large videos of lawnmowers on rain day. And there's no limit to the creativity when there's something that they love, right?

[Julianna Scott] (18:31 - 18:32)
Right.

[Kelley Jensen] (18:32 - 18:43)
And you with the foster, doing cakes for foster kids, that's an amazing thing that you did. And we're going to spread the word about that. Because I know that there's a lot of people that enjoy baking with their kids.

That's fantastic.

[Julianna Scott] (18:43 - 18:43)
It's fun.

[Kelley Jensen] (18:44 - 18:45)
Win-win. All right. All right.

Thanks for listening.

[Julianna Scott] (18:45 - 19:59)
Thanks for listening. Thank you for listening to this episode of The Refrigerator Moms. We have a free download that includes a full list of practical to-dos we shared in this episode on our website.

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