026: Autism and Insomnia – To the Edge and Back with Arwen Becker

[INTERVIEW]

Arwen Becker: A couple of months ago, I recorded this show and yet, it just didn't feel right. I don't know if it was clunky, I don't know if I was struggling with the topic, but it's certainly something that has impacted our life significantly and yet, I just don't know why it's been a little bit more difficult for me to talk through. And when I was thinking about songs, this one specifically is not on my overcomer playlist, but it's very, very poignant as it relates to today's show. And the reason is, this is the song that Randy and I danced to when we first got married. This was the song and it's Josh Groban, When You Say You Love Me.

And for whatever reason, maybe I knew the song really well, just because of our wedding and things of that nature, but I made a conscious decision when I had our two younger kids, Ashton and Easton, those are two that Randy and I had together. I made a conscious decision to sing this song to them all the time from the time in which they were born. And a lot of people are like, “I have a terrible voice” or things of that nature. And quite honestly, I didn't care if it was in my range or not, it was that the words were so important to me and I wanted to have a song that could be the go-to song no matter how old my kids were, that I could sing to them to bring them a little bit of comfort and peace because they know it so well.

And I loved it when they were 1, 2, 3, 4 and they would sing along with me or they would sing the parts and then I would sing some more of it. And the best part was the very last “you” that's in it, that ends the song Y-O-U, I would pause and then my kids would finish it. And so, I have such great memories of that. It's a beautiful song.

When you say you love me, the world goes still, so still inside and when you say you love me, and that moment, I know why I’m alive. When you say you love me, do you know how I love you.

Every year, we do family photos and it's something that we've been doing ever since Randy and I were married. Actually, we picked the date of our wedding because it coincided with an availability for the photographer that I had known and worked with many years prior to that.

And I look back so often at those photos, we have them posted up all over our house. I'm such a photographic memory keeper, especially for any of you who know me personally. And so, they're all strewn about our house and they evoke memories of what was going on during that time in our life. And the part that's interesting to me with photos is, and this is what we see on social media is, a lot of times people don't know what was going on behind the photo. They see these bright vivid colors, greens and yellows and then changing leaves of autumn in the Pacific Northwest.

And this one year, we were all wearing FC Barcelona shirts that we had brought back from Barcelona and yet, they were in such sharp contrast to the physical nightmare that I found myself in the middle of. And I look at the girl in these photos, picking up her small child as she's laughing and gently laying her head down on her mom's shoulder. And I just recall how hard that day was and so many of the days that were surrounding it.

So, about a month before our scheduled photoshoot that we had, we had a meeting at Ashton school. So, Ashton at the time, he's our middle son, he had started third grade and we were doing all that we really felt that we could to help him, but it wasn't enough. And this was especially hard on me as a mother because I could remember from the time that Ashton was 18 months old, we recognized that something wasn't “normal.” And at that time, he was going to a preschool near our house and often the teachers, especially when you go up into a new class, would say, “Hey, just you know, I'm just wondering, how do you handle it at home when Ashton does this?” Whatever this was, right? And my response was always pretty much the same, I would kind of like to laugh it off. “Well, you know what? Hey, when I figured that out myself, I'll let you know,” but there was this little feeling inside of me that I didn't know how to handle my own child and yet, that reflected back on me poorly as a parent.

And so, every time, Ashton shifted up into a new class, a new set of teachers, the conversation would start all over again. So, what do you do at home when Ashton does this? Or as he continued to get older, I then felt like I was being more reprimanded because he wasn't following and falling in line, like all the other kids and doing what they were supposed to be doing. And then, oftentimes, his responses were unusual or sometimes they were just flat out inappropriate for the situation. And I found myself mounting in frustration, just as many as the teachers were, but I guess I have a lot less patience, that’s why I'm not a preschool teacher.

So, by the time Ashton entered first grade, we recognized we needed to do something, we needed to get him tested, figure out what was going on. So, we did the first round of really extensive testing that eventually led us to a diagnosis of lack of focused ADHD, graphomotor issues, so he struggled at writing, he actually sketches when he writes, I don't know if any of you moms out there have any kids who do this where and then they'll erase it again and they'll restart, but he really struggled in writing, and that he was on the autism spectrum. And I had very high hopes, as I think a lot of parents do, that once we had the diagnosis in order, that we'd be able to just kind of fix these issues that we were dealing with.

And so, we started with an occupational therapist who was working on the graphomotor issues and trying to help do some reworking his brain. We had a child psychologist that we were going to, and then eventually that led to his 504 plan or an IEP plan that the school could utilize to know how to better deal with them. And I guess I kind of naively thought that that would solve most of the problems.

And I guess, I have to openly admit that I was one of those people, that before I had children and before I had a child who was diagnosed with ADHD and autism, that I kind of thought that was a bit of a crutch when I would hear parents talk about that, especially when it came to medicating a child. I knew nothing about it, yet I was casting these preconceived ideas and judgment on, it's like, what was it? Lack of effort by the parents’ part or just these things that I had thought about it. And I learned the very hard way how wrong I was. And I'm honestly so embarrassed that I even thought that, because so many struggle with ADHD and ADD and autism.

And so, following Ashton's diagnosis and then this formulation and this implementation of this 504/IEP plan for the school, we found that it wasn't working. He was really struggling just to keep up with the information to turn schoolwork in on time and to be productive and appropriate in the classroom along with the other kids. So, as he continued to get older, the problems just mounted, just continued to increase. Yeah, I have this boy that is so sensitive and so caring and doesn't want to make people mad at him. He's very much a middle child fixer, try and keep the peace.

So, we made it through first grade with a whole lot of meetings and a lot of help, a lot of scaffolding for Ashton and he headed into second grade dealing with all the same issues, of course, that we had, but they continued to get worse as the other kids pulled further and further away from him because of the writing issues and keeping up and just some of the social issues that we were seeing.

So, the year in which those FC Barcelona vibrant pictures were taken was the year that Ashton was starting third grade. And early that year, in the school year, I think it was October, I found myself sitting in a conference room at the school with the principal, the head counselor, a specialist, our child psychologist, his teacher, and then Randy and myself. And all of these wonderful educators, doctors, therapists, they all sat around talking with Randy and I about our son for what was probably the umpteenth time, I don't know. And his third-grade teacher, bless her heart, my goodness, she said something so profound and it made the biggest impact on me that day.

She said, “Arwen, let me first talk to you as a mom. My son has ADHD. I dealt with many of the same issues throughout his youth and I'm seeing the same stuff with Ashton.” And as she continued, she started to cry and she just said, “It breaks my heart to see how much he's struggling and it reminds me of my own son and how much he struggled, but he's in his 20s now and let me tell you, he's doing great. And there's certainly been a lot of trials over the years, but we found that he was just this round peg trying to go into a square hole and I see a lot of the same struggles. And yet, Ashton is this brilliant boy who wants to do the right thing, he's just struggling to do it. But now, let me talk to you as a 30-year third-grade teacher, if things continue at the same rate with Ashton, he's in for some significant difficulty in the years ahead. What we're doing and trying is not enough, we've got to look at some other options.”

And she dried her tears and I just sat there really, actually admiring her willingness to be so personal in that moment because she could see the struggle that Randy and I were under. And all the scaffolding that the teachers and the educators and the assistants were doing and the great administration, it just wasn't enough and it wasn't sustainable, I'll tell you that. I mean, the amount of time and effort that I was investing in trying to, I don't know, keep him fixed, make him normal, help him fit in, all those things, I mean, it was just so hard on me because I took it so personally that I thought that through effort and enough time as his mom, I could solve his issues. And yet, that was the day that I realized I lost total control as a parent, that I wasn't in control of that and I had never really been to begin with. And in that moment, I felt like such a failure as his mom.

And so, when we left that day, there was one unanimous consensus that Randy and I needed to start looking into medication for Ashton. And according to my younger non-parent self, I had failed. I couldn't fix it with food, therapy, effort, time, pity, anger, accommodations, I could not fix my son and I broke down. And within that next week, I would find myself plunged in severe and debilitating insomnia. It was unlike anything I had ever dealt with.

Maybe you're like me, I've had sleeping issues throughout much of my life. I think some of it is partly being overly anxious, being ADD myself and I, of course, didn't know that until Ashton went through all of his testing. My dad also finally got diagnosed in his 60s, my nephew is autistic, so it's not surprising, but for me, being overly anxious, trying out of mental focus to fix and control circumstances would often cause my brain not to shut off, it would just go into hyperdrive. And yet, I was fortunate because most of my life in school and sports that that worked just fine, but trying to fix a problem that's unfixable, a physical and chemical issue, was devastating to my ego as a parent.

So, I look back at those colorful photos. There's this one where I have Easton in my arms and I'm kind of flipping him over and we look so happy. And yet, when I see those photos, I see a woman who was utterly exhausted, who would have mounting anxiety. The moment the sun would begin to go down, it would start to cause a panic because I didn't think I was going to be able to fall asleep, I didn't think I even knew how to fall asleep anymore. I don't even know how many months, three, four months, I would go to bed with my family, I would lay there until midnight or 2am or sometimes 5am in the morning without falling asleep. The anxiety would just mount and it was debilitating. I was exhausted, I was terrified to get behind the wheel of a car. I'm still trying to run a business, be a wife, be a mom to three boys yet, I didn't think I would ever feel normal again.

And as I began to deal with my own health issues and the fact that I was completely spinning out of control, something really beautiful was beginning to play out for Ashton. We sought help of a pediatrician who specializes with kids with special needs and we began to try some medications. The first one, oh, dear God was an absolute disaster. Oh, my goodness. So, we gave it to him a total of four days, he had no idea what side effects could potentially be. I laugh about it, but at the time, it was awful, it was awful to see a third grader going through this.

So, day 4, I'm now having to go to school to pick him up again in the middle of the school day. And so, I came to pick him up and he was complaining about chest pains. He was absolutely crying uncontrollably and we realized very clearly, this medication was absolutely awful for him, it was not the right one. So, when I went in to pick him up, his third-grade teacher, the same gal who was so willing to be truthful and honest with us while we were working through these issues, she brought him to me and I met her in the office and she actually had tears in her eyes and she was crying and she was saying, “I'm so sorry, I did not mean for this to happen.”

And at that moment, I had the right expectations. So, they were set in the correct place. I honestly didn't expect the first medication to work perfectly. I didn't really expect it to be such a disaster, but I just kind of laughed and I responded back to her. I put my hand on her shoulder and I said, “You know, it's okay, I'll pray for you.” And she kind of chuckled and Ashton, of course, never used that medication another day in his life, but the next one would actually be the one that has sustained him for all the years to follow. It ended up being a beautiful thing for him. He calmed down. It allowed his body to sit in a classroom with other children and a lot of the major distractions that come from being in a classroom with 22 other kids, to give them some focus, but especially in those areas of difficulty, writing especially being one of them.

And trust me, it did not solve every issue, but it did help to alleviate a lot of the burden that we all felt as a family because it helped adjust his chemical makeup. And I'm certainly not a doctor, I'm not telling you, this is what you're supposed to do, but I just know it, this is our journey. And medication was the last thing I was never going to consider, ever. And yet, it ended up being a real benefit for him. And same thing for my nephew, I mean, he has a chemical makeup that benefits from medication. Same thing with my dad. It's very much a genetic issue that runs through obviously, the fiber of my family.

And the interesting part is this dramatic resistance that I had to taking any medication for anything was actually what solved my insomnia as well. And within a few days of not sleeping, I went into my primary care doctor and she prescribed some heavy-duty sleep aids and it wouldn't touch it. I could double down on it, but because it was anxiety driven, not exhausted, lack of sleep driven, my anxiety and the chemicals my body would release would overwhelm the medication, so I just feel even more crappy the next morning because I'd had this medication, still didn't sleep. And so, just all the adrenaline would just override it.

And so, I found myself back in her office and I'm bawling my eyes out sitting there because I just couldn't function. And I knew that it wasn't that I just needed a sleep aid, it was that I was spinning out of control. And she prescribed a medication for me that's more often used for seizures in patients, it's a narcotic, it's one of those that has the warning that you don't take it more than two days in a row. So, given that I am somebody who really takes no medication whatsoever, occasional Advil, I was absolutely terrified that I was going to get hooked on this medication, but I was more terrified that I was never going to be able to sleep normal again, that I had forgotten how to sleep.

And I realized at that point, I had to surrender and trust that the doctor had my best interest in mind. And after just a couple of days, it began to work. My months of sleepless nights and this awful, groggy, angry, these useless days, I had a few beautiful nights of sleep again. And it began to restore my mind and remind me that I actually in fact, do know how to fall asleep. And there's so much irony in the fact that I was so against medication before I had kids and any issues myself and feeling that it was some form of pride if I didn't have to be on anything like that, but now recognizing I had no control over what Ashton was going through and that he was going to have to be medicated to be able to help him through this time period in life of being able to fit that round peg into a square hole, but also, I needed to be medicated to be able to help fix my insomnia and the irony that that was also fixed by medication, medication I no longer need.

Once I got back into a routine and got my mental faculties back and started remembering what it felt like to have a great night's rest and doing a lot of therapy and making sure that I was journaling a lot during that time period, finding ways to do nice things for other people when I felt so crappy myself were a lot of things that really helped. And you know what? For Ashton, he is a beautiful, smart, talented, good looking engineer brain, can recall facts like nobody's business, hyper-focused on the things that he wants to be 15-year-old man, young man, and he's finding ways to navigate his own life and work through some of the social issues that come with autism.

So, what were the main takeaways? Well, number one, you need to embrace the suck. I just had to, I had to embrace the suck, I had to get past these initial phases of anger and the despair and all the things that I felt now not being able to sleep. And I started to look forward to those quiet moments in the middle of the night, writing in my journal, spending time with God, time, honestly, that really reminded me of those precious moments that you have with a newborn baby, where you're exhausted, yet, you're recognizing the preciousness of that private moment, where you've got the newborn baby on your chest and you're rocking them and you know that these days are going to fly by. Well, I was having precious time with God, he was doing a lot of good work for me and helping me to really recognize my need to let go, let go of control and surrender.

Secondly, I sought help from a doctor. I had to surrender that fact that I might need to be medicated. It was the only option that I had left because nothing else was working. And there is a scripture that says, use every endeavor to heal yourself. And one of the things that I'm so happy about with Ashton is that we did go through all the pieces of it, his diet, therapy, occupational therapy, counseling, working with tutors, a school, all of that. And that led us to one very clear path, that medication was going to be the next good option to try, didn't mean it was going to fix it, but we at least knew that we had done the things that we needed to feel like we had been good parents, to not just jumping into the medication, but it ended up being the medication along with those other things is really what he needed.

Thirdly, be willing to humble yourself. Talk to experts, do not take it to social media. Dear God, please don't do that because you're going to get a lot of uneducated opinions that don't know your backstory. It's like asking for financial advice from somebody who's not a financial advisor. You don't do that because that person doesn't know your backstory, they don't know your unique situation, so please don't do that and open it up to a bunch of friends, don't do that. You know your child better than anybody.

I had some very well-meaning friends at the time we were going through this with Ashton, tell me that medication that Ashton didn't have wasn't autistic ADHD, that medication wasn't going to solve it, all of these things and that we just needed to pray our way through it. It was certainly well meaning, I get that, and they didn't mean it that way, but they also didn't have kids with special needs. So, the advice wasn't warranted for the situation. And so, you need to trust your intuition as a mother. Keep asking questions. Be willing to put your pride aside. Do what it takes, even if it's uncomfortable and inconvenient for you or expensive. We did not have the money to be shelling out for all of this medication. This was right at the time that we were going fall-off from the Great Recession, but to see what it was doing for him made it worth it. And so, we found other ways to sacrifice because it's not about you, it's about them.

And then finally, when you're exhausted, it's really easy to focus on yourself. Being without sleep, it's a tough place to be because your brain doesn't function properly, but you need to take your eyes off yourself and still focus on people around you. So, if you're in a situation like I was, what I would suggest that you do is take a moment, go for a little walk, sit down somewhere, and write down maybe 10 things that you can do for somebody else. Life does not stop because you're exhausted, find a way to still serve people around you.

Best piece of financial wisdom, invest some of your money into charities. So, you are not here on this earth to use every penny that you make. We are called to be good stewards of what God has entrusted us with financially. And most people think of the financial economy, kind of like a pie, like, Oh, well, that means that I get a larger piece and somebody else got less, yet, in the divine economy, a financial economy created by the Creator of the heavens and earth, finances are a river. As long as there is not a swamp, as long as you are not the swamp at the bottom of the river, it will continue to flow. That flow, when money comes to you and is able to go through you to not just buy everything you ever need and want, but to find people and ways that you can sow seed into, that is what we're called to do. Because I'm telling you, some of the most generous people that I know continue to give and give and give, yet, their needs are always met. Always.

A book, this one doesn't have a name, journal, find a journal. My journal was my saving grace during my months of insomnia. I would just sit by the fire and have a cup of chamomile tea and this was at midnight as I was up because I couldn't fall asleep and I would just get my thoughts and my hurts and my feelings out on paper and it was just so therapeutic and beneficial. Sometimes it's great to go back and read those, but be careful and I'm going to specifically say this with regards to what I went through with insomnia as I went back and read through it once. And it was kind of like, Oh, yeah, I remember that time and I went back and read it and I started having some of those same feelings of anxiety starting to come back. And so, I reminded myself, that's probably a part I'm not going to go back to anytime in the near decades because it's an area I struggle. Sleeping has been a problem I've struggled with my whole life, basically. And so, just be mindful of that, but journaling is fantastic.

And then, the quote, I already said it and I'll say it again. Proverbs 18:9 - Use every endeavor to heal yourself.

[END]