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Autism Diagnosis and the Pressure to Do Everything Right with Brittney Crabtree · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to the Inch Zones podcast. You can tell by our faces that Brittany and I were actually laughing before we pressed record. Because sometimes in the hoopla and wild nature ride of being an autism mom, there is a very fine line between laughter and tears. And something that I always love to illuminate from, from the Inchstones platform is that both can always be true. And in the month of May, I am really trying to focus most on the real but behind the scenes stories of fellow autism moms. What they feel, what they emote daily, what they remember from the earlier stages. And I am so thrilled to welcome Brittany Crabtree here today. She is one of the four moms of the Moms Talk Autism podcast that I was lucky enough to be a guest on and had them on as a whole. And now I'm going to get to do one on one. It's like, this is like one on one with the MTA ladies. Brittany, thank you for what you do for this community, for how you use your platform, and I can't wait to hear more about the nitty gritty today.
• 1:01
  Speaker B: Thank you so much for having me.
• 1:03
  Speaker A: So before mta, before you were on groups, you know, text change with autism moms, take me back to what you remember of those most earliest days when your child was diagnosed.
• 1:16
  Speaker B: Yeah, so I've, I have four kids. Two have been diagnosed with autism, but one was diagnosed, it will be 18 years ago this, this winter. So it's been a long time and it was done a little differently back then than it is now, and it will probably be different 18 years from now again. But my initial feelings, you know, and then again, I'm really old now, so I have to try to remember all these details. Right. But my initial thoughts were when we went to that pediatric, you know, well, check visit. And the words autism and autistic were thrown at me for the very first time. So it's not the first time I had heard those words. I have a degree in child psychology, but.
• 1:54
  Speaker A: But it just, it's amazing how your brain, the mom brain and the professional brain and the educational brain do not fuse in moments like that.
• 2:02
  Speaker B: No, there was no fusion. None. It was, it was pure, it was pure shock. I went into shock. I went into shock. I am not an overly emotional person and I do not shock or react quickly to anything. I'm pretty tough girl, tend to be pretty pragmatic about stuff, but that you could have knocked me over with a feather. And I held it together until I got to my car and then I lost it. In the car. And of course, as one does, I called my mom because that's what we do. And she could not understand a word I was saying because I was sobbing so hard and we had not received a diagnosis. It was just the words were said to me like, maybe this is a possibility. And I think my soul, my heart, my mom gut knew that that was true. And so that was more shocking than actually receiving the diagnosis because I had time to process, by the time we got to, you know, the testing and, and seeing the specialist, I, I was there and, and probably process that a little bit better. I would not recommend going to that appointment though, to receive that diagnosis by yourself. I don't know what I was thinking. I wasn't thinking. I went by myself.
• 3:12
  Speaker A: You know, as someone who's a very independent mom and just individual too. I think it's sometimes this, like there's a lot of unconscious, subconscious choices that we make and I don't think that we sometimes are even aware of that. And it, unfortunately there's grief tied to these choices we make that we probably were just making. Because you were being Britney.
• 3:31
  Speaker B: Yes.
• 3:31
  Speaker A: Right. I tackled a lot of the things one on one with Milly and Mac directly, just as is because I was the stay at home mom. It wasn't like a decision I was making. I was just moving as Sarah.
• 3:43
  Speaker B: We're just doing, doing our normal thing and then you get right bludgeoned in the side of the head with this thing at this appointment and maybe, maybe have some support with you. I don't know. I, I definitely have support as soon as I left the office, but I just didn't take someone physically with me there. So yeah, it was, it was initial, like wave of just pure shock and then subsequent waves after that kind of rolled over me as, as our diagnoses and our, you know, initial those first few years kept going.
• 4:11
  Speaker A: What did you think in those first moments that your life would look like as you were processing?
• 4:18
  Speaker B: Yeah. So looking back now, I can't, I couldn't tell you exactly what I was thinking in that moment, but looking back now, I think I remember that we have this analogy on our podcast, on the Moms Talk Autism podcast. And what we say is you have this glorious picture, like you find out you're pregnant, you find out you're adopting, you find out your family is going to expand in some way. Right. You have this beautiful picture on your mantle of your, of your new family and what, what it's going to look like for you. And I think.
• 4:43
  Speaker A: And it's like 4D. It's like, it's all of it. It's not just this flat. It is 4D.
• 4:47
  Speaker B: It's gorgeous.
• 4:48
  Speaker A: It's.
• 4:48
  Speaker B: It's. Maybe it's not perfect, but, you know, you're gonna, you're gonna put in the work, you're gonna do the work, and it's gonna be the best it can be. It's gonna be fine. You're gonna have challenges, but you got this, you know, you're a strong woman. You can do this. And, and I, I had every bit of energy and stubbornness and determination to make my family what I wanted it to be and to, to mold these young minds. I was gon, I received this diagnosis, and it is like that picture was thrown on the ground and shattered into a million pieces. I did not know what my family was looked like in that mo. I mean, I knew. I knew what it looked like in that moment. Still, it was the same. My child didn't change, but I did not know what it was going to look like a year from now, five years from now, 10, 20, 30 years from now. I didn't know what it's going to look like as an empty nester, if I was even going to be an empty nester. Spoiler alert. I will not be an empty nester. Like, it's just like, it's all of that. And so then, then it's like, okay, well, now what? I'm an action person. I'm a doer. I, I don't wallow. I don't. Yeah, we don't, we don't sit in the feelings. We get the stuff done. That's, that's my brain. That's how I work. So I can't put this picture back together. I literally, there's no way. You can't. So what you have to do. And this is where the light bulb went off, I was able to finally kind of like move again, was I have to make a new picture. I have to create a new one. I don't get to take that old one and try to piece it back together. I have to literally build up a new dream, a new photo of this family from scratch.
• 6:20
  Speaker A: Do you think that collapse, which I think I can't imagine, a single woman that has gone through what you and I have, receiving a diagnosis. Do you think that so much of that pain and the shattering of that photo and, and then getting to reassemble it differently, the pain alongside of it, is because we've been so deeply conditioned in ways that we never consciously chose, that we've been fed through decades of our own lives to just expect a certain outcome. Expect that picture through growing up with, you know, in the 1980s, 90s, early 2000s. Like what that, like maybe we can't separate that sometimes that it's not even our fault that we feel such pain.
• 7:01
  Speaker B: I think it's certainly part of it. I had a wonderful childhood. I have still have wonderful parents. I went to, to elementary school And I absolutely 100% believe that if I really wanted to, I could have been President of the United States.
• 7:14
  Speaker A: Like literally, like I.
• 7:16
  Speaker B: Why not? I just wasn't interested. So I'm not. If I really, really wanted to, I
• 7:20
  Speaker A: could like Madam Secretary sounds like I absolutely can do that. If I'm the president of the National Honor Society, I can absolutely be president.
• 7:29
  Speaker B: Enough, enough grit, determination and like education. I can literally do anything. And that's not untrue, but. Yeah, but it does set you up for adult life, especially when it comes to children in circumstances where maybe, maybe that isn't quite reality.
• 7:48
  Speaker A: Yeah, so what? So, so you took this all in, you know, you processed it. You were piecing together what you get to do to reform what that future and that photo on the mantle looks like going forward. What did you physically do? Was that, was, was that Britney the mom going to every therapist and seeking out every interventional intervention behavior specialist? Was that you sitting and just realizing that maybe you had to reframe your day to day? Like what, what does that. I always want to create that. What is that chapter? What did Brittany do then?
• 8:20
  Speaker B: Those first few years, the Internet wasn't what it is now, but I did all the research I could. I went, I dove head in. There was no denial. There was no like sitting and processing feelings. I'm not saying I did this correctly, everyone. I'm just saying this is what I did. And there was no taking the time to reflect and to, you know, come up with a plan. It was go, go, go, go, go. Do, do, do, do, do. We're doing all the things, we're throwing everything at this because it was drilled into my head that early, early intervention, early intervention is the key. And if you don't do that, then it will, you know, you're not setting your child up for success.
• 9:01
  Speaker A: Yeah, I felt like every day. Yeah. I mean, again, our years of diagnosis are different. That didn't change. You know, your, your child was diagnosed almost 18 years ago. Milly was only diagnosed nine. So even in a nine year age range, that that didn't change. I was very similar of saying you know, neuroplasticity under the age of five, like, oh my God, you every day felt like. I mean, I literally felt the beaches of Normandy being shot at trying to navigate something to get her. And like, being to safety was like never stopping. Right? Like never stopping that.
• 9:34
  Speaker B: And those, those statistics and those things aren't necessarily untrue. I'm not saying they're not true.
• 9:39
  Speaker A: Right.
• 9:40
  Speaker B: It is. You do need to do those things, but maybe you don't need to kill yourself in the process. There needs to be a little bit of moderation there and that, that can be processed and like seen differently for each person. It's kind of an individualized thing. I am an overachiever by nature. I'm a type, a very control freaky type of person. I have a plan and we're going to stick to it. And I will, I will, you know, wear myself into the ground doing this thing. And so for me to have that mentality with this gargantuan thing that I don't really understand and I'm just being told to do all of these different therapies, I, I took it too far. Um, and it, it was all done out of love. And you know, what I thought was the right thing to do. And I didn't do anything necessarily wrong, but if I could redo it over again, I would probably be a little bit more moderate in my amount of things we tried all at once. The amount of time and effort I put into myself into, into all those therapies and early intervention and maybe would have like taken a step back and we would have done some more fun things. I would have like given myself a little grace. You know, I think the sense of
• 10:47
  Speaker A: urgency is baked into receiving of a diagnosis and it doesn't necessarily come with a timestamp on anything. But I think that when you find yourself competing against a developmental timeline, it takes a really stoic, a very conscious ability to, to slow it down. And so I think that, you know, you're speaking to. What I'm sure the majority feel is that reducing urgency is very difficult. It actually creates a very vulnerable state because you're trying to bypass what your natural impulses are or to keep moving. And so I think that you're speaking to that and hopefully giving a lot of virtual grace to many of us that haven't done this exactly the same.
• 11:31
  Speaker B: I went into a marathon at a full sprint.
• 11:34
  Speaker A: Yeah.
• 11:35
  Speaker B: And just pace yourself a little bit. Yeah, it's not a sprint. This is truly a marathon.
• 11:40
  Speaker A: You know, when I spoke with you when did you begin realizing on your journey that that was imperative to how you'd be best as an autism mom for your children?
• 11:49
  Speaker B: Yeah, I mean, like I said, with my own childhood and my own familial and. And friend groups, I. I've always had a lot of support. I've been very lucky that way. And so I, I went in with this, with that team mentality. My husband and I have always been on board. I know there's many, many families out there where maybe one spouse isn't as supportive or doesn't agree with the diagnosis or, you know, there's a lot of challenges that can be. Even right at the very beginning, I did not experience those things. So I consider that a blessing, and I. I try not to take that for granted when I look back. So I started off with a solid, like, core team, I guess, you know, grandparents and. And some friends around who were willing to. To stick with me and learn with me a little bit. And that helped a lot. But as I call it, I love to talk about grief, not because it's such a wonderful thing, but because it's so important. But as. As time has gone on and the gap between my friends and my cousins and my. My siblings, children, you know, the gap of those neurotypical children and my child grows larger and larger and larger. You see more of a discrepancy between my neurodivergent kid and this neurotypical child over here. I call that grieving. The gap and that grief that required bringing in extra support for me, that really changed for me. I mean, subconsciously, it was always changing. I was reaching out, I was feeling people out. I was trying to make friends with the other moms at the special ed preschool and things, you know, I was. I was dipping my toe in, let's say. But what it really, really changed is when we had some significant behavior issues and changes with the onset of puberty for my son. And that's where our behaviors and our lives truly changed from. This is a child who maybe looks a little different, acts a little different. We can get by, you know, whatever. We can still go to the park to know. This is significantly different. We, the behaviors and the support and the protective services, the supervision that is required is significantly different now. And it is very, very obvious from a few moments with my son that something is different here where I felt extremely isolated and alone. And as I. As I processed that and. And thought about it more, I realized I needed people who really, truly understood what I was going through.
• 14:16
  Speaker A: So I missed the Very last part. But next thing I was going to ask that I think is very much in the same vein. Did it ever feel like this whole experience is unfair?
• 14:26
  Speaker B: Yes, it did. Especially at the beginning. I think there was. I like fairness, I like things to be even. And you know, what you get in is what you get out kind of deal. That's my mentality. I don't know, you can call that he's kid raising or you know, whatever, but I, yeah, it does, it does feel. It did feel very unfair at first. And there is part of that grief process, like I talked about, is coming to kind of that maturity and that level of acceptance of like, okay, this is not fair. No, it's not. Doesn't really matter. I think that that's something that takes some time.
• 15:06
  Speaker A: The grief that sits so nestled to getting to do something for your child is another chasm. I think that always I'm trying to fill and trying to create grace for myself in that. Because you can feel two things at once. You can feel profound loss in what is not happening based on what your thoughts and dreams and what picket fence desires were. And then at the same time look over and see your child with autism, do something, experience life, laugh, connect with someone and it becomes this over wash of I'm here, I'm watching this happen. And that is what I get to do as a mother, period. I don't know if that mentality was sold like we were saying, we were sold this perfection. Maybe what we should have, and I wish that generations going forward is that whatever diagnosis you receive, you still get to do it. You still get to be a mother. And redefining what that looks like is part of that journey.
• 16:03
  Speaker B: Couldn't said it better myself.
• 16:04
  Speaker A: When you look at yourself now, how do you feel about Brittany, Autism, mom, feel?
• 16:11
  Speaker B: I look back at myself and I just cannot believe where I am now to who I thought, where I thought I would be. The past.
• 16:19
  Speaker A: You're like. You're like. Someone talks about you and you go, like who? Like that person. Do you feel that?
• 16:25
  Speaker B: Yeah. Like what, what is. What is going on? Yeah, exactly. Yes. I just. I just never thought I would like actually physically be in the place I am living. Where I do, having the kids I do, doing the things I do every day, my day, the overall look of my day from the moment I wake up to the moment I go to bed at night is just completely different than what I thought it would be for that young little, you know, mom, I got married and had kids pretty young. And I just, I Just could never have pictured what I'm doing and the people I have met and the lives that I have touched and even more importantly, the lives that have touched me. It's just, it's just so different. And it's not necessarily a bad thing, it's just surprising.
• 17:07
  Speaker A: Yeah, well, life is full of many surprises and these children that we get to raise, all are ripe with them. And I think what I know that the greatest philosophers, theologians, religions of the world are telling us always is to stay in the now, be where your feet are. And I think that your journey speaks to the evolution of that because that's what it forces you to do when you have a child with autism, is it reminds you daily that you actually can't look too far ahead. And looking into the past doesn't do much. And I think that your, you're speaking to that.
• 17:41
  Speaker B: Yeah, I think that's probably the biggest lesson I've learned from all of this as a chronic over planner and overachiever is that I cannot look too far ahead, literally cannot predict what's going to happen. And if I do, if I try, I will be so wrong. Not only with my kids behavior or what the next step is for them, but even just like where we're going to be, what things we are going to be working on, you know, five years from now, a year from now, I can look about four to six months ahead. And that's a good window for me. That's what I've learned. That's about as far as I can go. Any more than that and it's, it's completely a waste of my time.
• 18:18
  Speaker A: Well, I think, I think that means that you're, excuse my French, but kicking the shit out of this life and part of that.
• 18:26
  Speaker B: Thank you.
• 18:27
  Speaker A: No, I, I, I, this is why I think that when you dig in and say planted as a, as, as a mother, the support, the people around you only augment what you're putting out into the world. And Brittany, I'm so thankful that you stand as such a good example of that. Because none of us are meant to be these static humans like we are evolving alongside our children's whose developmental timelines are wildly different than our expectations. And I think that because we get to do that, because we get to say that this is never in a wasn't in a million years on my bingo card for my life. What it forces you to accept and sort of bow to the process is that being here now gives you the most luxurious parts that I always was praying for from probably when I was a little girl. I just want to know what real love is. I want to know what a collective feel love.