Piece by Piece

Time Travel Advice - What I Wish I Knew

• Christi Jensen & Angie Matheney

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Join us—Angie Matheney and Christi Jensen—for a candid Q&A-style conversation where Christi opens up about what she wishes she could have told her younger self when Alec was first diagnosed.

We talk about the shifting priorities that come with raising a child on the spectrum, the pressure to "do everything right," and the importance of giving yourself grace. Whether you're just starting out or years into your journey, this episode offers encouragement, perspective, and a reminder that you're not alone.

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SPEAKER_00:

Welcome to the piece by piece autism podcast with your hosts, Angie and Christie. They've worked 25 years to help Alec get the most out of life. Let them tell you how they're doing it. Hello, and welcome back to the piece by piece autism podcast. Today, we are going to do a little throwback time travel advice by Christie. We want to have a little bit of a question and answer. back and forth because we know that being in the moment of an autism diagnosis has got to be daunting to say the very least it is so we want to talk about kind of what you did where you went who did you turn to for guidance what were your first steps treatment urgency and all the things so let's let's start uh started off by telling us about how did you go about getting a diagnosis my father-in-law found a he is a physician in lubbock texas where we were living at the time and he found a really good pediatrician to send us to oddly enough he was an oncologist but he was just really a gifted pediatrician and very aware of a lot of a lot of things going on with children and I took him in and he immediately said, have you heard of autism? And, uh, I had only barely heard of autism. So, uh, yeah. And as a reminder, Alec is now 27 years old.

SPEAKER_01:

Yes. And I mean that many years ago, right? Like autism is such a

SPEAKER_00:

prevalent word in our community right now, but It was not so much 27 years ago. It was not prevalent. I guess 26-ish years ago because Alex was how old when he was diagnosed? He was two years old when he was diagnosed. So that guy, the oncologist, pediatrician, sent me to a diagnostician and she specialized in autism, which was amazing in this context. town of, uh, I don't know, 200,000 people at the time. Yeah. There was this really good PhD diagnostician and autism. And so we took Alec in to see her at two years old. And I was so glad that I went with her because there was no credibility issue. I mean, I trusted her whenever I went in and I could see that she knew her stuff.

SPEAKER_01:

Yeah.

SPEAKER_00:

And so I, felt very good about that. The thing I didn't feel good about and that I wish I could go back and tell my younger self is take someone with you whenever you get your diagnosis because she told me your son is looking autistic, but we have to do all of these tests. We have to send them home with you and your husband and my mom, who was really close to Alec at the time. And you have to do all this testing. And so it would have been nice if I had realized it was kind of a big deal. Yeah, that's a lot to have thrown at you. especially on your own. Yes. And I, and I, my husband was traveling, you know, a lot for his work and he was, he was gone. And I don't know why my mom didn't come with me. She was probably working. And so, yeah, that was kind of bad, but I wish I had not done that. And I also wish I had just, I think I didn't want to accept it at that point that he might be autistic because I The pediatrician before the pediatrician that referred me to the diagnostician had said he might be deaf. And so I thought, I didn't know what I was really looking at at that point or what was going to end up happening with the diagnosis. So I, you know, I wish I had looked into autism a little bit more, educated myself. Yeah. I bet those are natural feelings to just say, wait, no, this can't, can't be. There's got to be something different or more, but

SPEAKER_01:

knowing that you trusted your diagnostician or she had the expertise in that field, you kind of have to take it and run with it. Yeah,

SPEAKER_00:

and I mean, part of it might have been good that I had no idea what I was going into. True, true. I literally didn't know what I was going into. I didn't realize that it was... as dire as it was. Yeah. Yeah. I thought, oh, he'll snap out of this and we'll be right back to normal life. And at the time of the diagnosis, did they have

SPEAKER_01:

an idea as to his severity level at that

SPEAKER_00:

time? Yes, they did. Okay. So you did know. They said he was severe. Okay. Yes. He was, I mean, just his behaviors and absolutely zero development of speech. Right. Zero. No mama, dada, nothing. Yeah. So... All right. Well, then once you had that diagnosis, what then were your next steps? Well, I went home and we actually did have internet then. We had dial-up. You've got mail. So yeah, we had dial-up. And so I got on and I would look... up what to do. And the main thing that I saw was this data driven, proven method called ABA applied behavior analysis. And I just took that and ran with it. The thing that I wish I could change is that I would have advised myself to just chill. yeah chill out don't panic it's only been six months since his diagnosis and i had a home program set up at six months now that i look back on that i go crazy whoa because i also have three other children my husband traveled five days a week we had a pretty uh hectic and robust life and so to think that i could pull all that together in six months i'm not really even sure how i did it yeah so i mean incredible that's quite the achievement but hindsight you're saying it

SPEAKER_01:

maybe wasn't

SPEAKER_00:

that dire it may be yeah

SPEAKER_01:

yeah

SPEAKER_00:

because i mean we were starting early is what i'm saying we were already starting early so like so what so wait another month and don't be so panicked you know yeah yeah but i just felt like ah i was in a race against time and and the sooner you do it but he got an early diagnosis at two right and if the doctor had been better at the diagnostician he could have been diagnosed earlier sorry that's what that's an aside there okay okay So the other thing I would say is to pay attention to your gut, your inspiration, whatever your guiding force is. I've said it in other podcasts. I maintain that that's an incredibly important part. Yeah, your mother's intuition. Exactly. And I'm glad I did that. I'm really glad I did that. If I had it to do over again, I actually did it this way before. probably by accident i set up my applied behavior analysis structure first getting the consultant hired and then as quickly as possible i got the speech therapy and then the occupational therapy right so you know that was good that was all good i just didn't realize it was good and i didn't get to celebrate Because I was feeding myself up because I wasn't doing it faster. I mean... So anyway. So that brings me to my next point. Give yourself grace. Chill out. Ask for help. Savor your child's childhood. Because your child is still a child.

SPEAKER_01:

Yeah.

SPEAKER_00:

And you're bringing in this intense therapy because it's... what's proven to work so you're going yeah I need to do that but you also have to It's not the childhood you expected or hoped for, but it's the childhood that you have. And so just to enjoy little moments of that. I wish I had done probably a little bit more of that and not felt so, oh, we've got to hit this hard. We've got to lose this diagnosis. Push, push, push.

SPEAKER_01:

Yeah.

SPEAKER_00:

I wish someone had just said, hey, you're not going to lose the diagnosis. And, you know, we did eventually have consultants that helped. that told us you that bluntly like oh he'll live with you forever or he'll always need your help or whatever so but i don't want to frustrate anyone we're in such a good place now and so there's there's great things that that can be done there's a lot of hope awesome i also wanted to say i i have friends along the way that had a hard time listening to professionals and actually doing what they said, I think it's incredibly hard to 100% of the time do that. I just think you have to run your family the way you run your family and you have to make decisions based on how much time you have to devote or whatever.

SPEAKER_01:

For sure,

SPEAKER_00:

yeah. So you just kind of have to make that judgment and then apply what you're learning from the professionals. If it makes sense to you, if it feels your gut check is good... Your inspiration is there, whatever it is that's driving you to make the decisions. And then my thing always comes back to the mom versus the teacher. With applied behavior analysis, it's kind of a way of life. It's a way of thinking about every interaction you have with your child. Yeah, it's not

SPEAKER_01:

just... nine to five clock in clock out yeah

SPEAKER_00:

no and so that can get blurry as far as like the lines on that and so i would just say be aware of it and decide how you're going to to make that work right because you still have to stay sane at the end of the night you know that's preferred it's preferred not always achievable yeah at every moment but it is preferred yes anyway

SPEAKER_01:

well we know a typical kid is called an adult which is crazy at the age of 18.

SPEAKER_00:

Adult in quotes, right? Yeah. It still is laughable. But what did you experience as Alec transitioned into adulthood? Well, I was in denial big time. And I realized looking back on it, I go, oh my goodness, why was I in such denial? But I think it's, I envisioned him just being a child. Like I always have envisioned him way younger than he is. I think that's natural with his developmental delays to

SPEAKER_01:

kind of see him a little bit younger, needing a little bit more support in areas that his

SPEAKER_00:

peers may not need would lend to, know wanting to keep him little and you're protecting him and yeah he's just your baby too he was your youngest and i thought he would always want to live with mom and dad and just be happy there just with the warm cozy life we had given him he had his own room he had his barney on the tv i just thought how cozy is that but guess what he wanted to be an adult

SPEAKER_01:

yeah

SPEAKER_00:

and because he could express himself on his letter board he could express this oh i want to do things that my siblings are doing who have gone before him because he's the youngest of four and he's seeing them going away to college then them get married you know yeah life moves on from mom and dad's home Yes, they moved on from mom and dad's home. So he's, he kind of craved that. And I wasn't ready for that. I was just like, wait. So anyway, that that was rough. The other thing was rough, like just the years of having caretakers in and out. in and out, coming in and out. And I think especially as he's become an adult and we have people who come in overnight with him, it just feels like it's a revolving door of people coming in and like us getting to know them, getting to love them, and them graduating from college and moving away. You know, it's like I wish I could have... brace myself better for that but i guess you handle what you handle right as it's given to you and uh so i would also uh give myself more grace which i think everybody probably needs to do at one time or another in your child's development and your autism treatment and that's just saying you know you're doing okay you're on the right track you're giving him a full life It's enriched. And if he has to spend a little bit of downtime sitting in his chair, taking an app, that's okay.

SPEAKER_01:

Yeah.

SPEAKER_00:

And just kind of chill out and let adulthood be a little bit more chill approach than his direct trial, you know, table trials, et cetera, that we were doing. That just... we're go go go push push push lots of programs lots of data lots of all the things when he's younger to meet all these expectations and milestones yeah and I think you pull me back sometime right now because I tend to be hard driving as far as like wanting him to accomplish more because I just know he's got a lot of oh yeah yeah and I think I would celebrate the wins more and worry less about his deficiencies because he still has a huge deficiency when it comes to receptive discrimination. If I say, go get your toy, he can't do that. And that bugs me because we've tried every program that we can possibly think of, and we have not been able to teach that. It's truly a deficit that... I don't think can be overcome at this point. If you say he's 27 years old. So just accepting that some things will be, he'll keep learning and he'll keep growing, et cetera. But we can celebrate that he can ski down a mountain independently with. Yes. Like, did you ever dream when he was a little tyke that he was going to be zooming down the mountain with the coolest ski instructor next to him? Never. Never. With the amount of independence that he has done. It's incredible. No, and that's what I'm saying here. It's like, just enjoy those things. Yeah. That's kind of a big thing, but he does a lot of little things that are like, you know, oh my goodness, just getting his shoes on before we're going to go somewhere. Of course, that's in context, right? rd but he's doing it yeah receptive discrimination yeah and so just celebrating those and and and so if i were to travel back in time those are the things that i would really want to tweak a little bit or enjoy a little bit more or be a little bit more chill about no i love it word words to the wise right you've been there you've done it Um, be kind to yourself and reach out, get the support, have the doctors and those working with your child be experts in their fields and really be able to know with your mom intuition, whatever you want to call it, that you're making the best decisions for your child. So not

SPEAKER_01:

only that, but still balancing. and having the energy to also

SPEAKER_00:

enjoy your other children and to run your home and to support your spouse and work and other demands that you have. And take care of yourself. Yes. The balance of it is really crucial. You know, maybe I should say that would be a regret too. I feel like that. Yeah. You always get, leave yourself to last and it is so hard when you're in that caretaking role. But for sure.

SPEAKER_01:

Yeah.

SPEAKER_00:

Well, we are so glad that you joined us today. That's a wrap for today's episode of piece by piece. If you're loving these conversations as much as we are hit the follow button, share the show and help us spread the word because every piece of the story matters. If you've got a story question or idea slide into our DMS to shoot us a message. We'd love to hear from you. You can find us on Instagram

SPEAKER_01:

and Facebook at Peace by Peace Autism Podcast. That's P-I-E-C-E, Peace by Peace Autism Podcast. Until next time, see you later.

SPEAKER_00:

Bye-bye.