After getting this site back up this afternoon, I felt a little bit more grounded, like I was navigating all of this better in my mind. I miss having a blog because I’m old. I’m 42, after all.
Anyway, I just left to pick up my oldest son, whom I can never name here on my blog because I know he doesn’t want me to have anything online about him that his friends might find, and I get that. So here on the blog, I will call him L from here on out.
I just went to pick up L from school. I still pick him up, or D (my husband, I’ll keep his name safe too just in case) usually does, but this year L started riding the bus in the morning sometimes. We’re not totally there yet with the schedule in the morning. It’s hit or miss. But he’s growing up so quickly. That’s another post for later.
Right now, I just wanted to get a few things out of my head. First, D and I went to go get our new driver’s licenses this morning, so that basically ate most of the day away. Glad we got that done finally though after being here over two years now. But I did get the site set up too as soon as we got back, which is good, I guess, for the most part. And I got an email crafted for the doctor I want Gavi to see.
About the blog, I need a place to put my thoughts. Not just a Substack or something, but back to the world of your own domain name. It feels like my own. I’ve only been putting my thoughts down privately so far for years. They’re not online, and obviously I shouldn’t publish everything I want to say because it would be a lot and maybe crazy, but maybe I can try to put most of it here.
Anyhow, when I emailed the new doctor I read about in our area, I specifically asked him about lowering Gavin’s risperidone. I told him that Gavin has been at 1 mL for a while now.
You know, 1 mL doesn’t sound like much, but when you’ve been using risperidone for so much of your life, maybe something in your brain has really changed and become dependent on that little bit of the drug you’re getting.
I just watched a YouTube video this afternoon that I stumbled across from an account called Alternative to Meds, I think. I need to rewatch it, but the key takeaway I got that stuck with me, and that I want to mention now, was that he said if you’ve been on risperidone for a year, it might take a month to get off of it, but if you’ve been on it for 10 years, it might take 10 months or a year.
I mean, obviously he knows adults who use risperidone are going to watch this video, and doesn’t want to scare them into not tapering off, so I don’t know. I feel like maybe he was over simplifying what he was saying a little bit. But what I took from it was: yeah, it can take a really slow taper to get off of this.
And it makes sense because I am really supposed to give Gavin really tiny reductions during the taper. But that requires a whole lot of patience. One little line on the syringe at a time I figure, for maybe two weeks at a time, until I reach 0.
The last time I tapered his risperidone, I went slowly from 2 mL to 1.75 mL to 1.5 mL. But there were also times when I tried to get rid of it and went straight from 1.5 mL to 1.0 mL in one night. Honestly, after doing that a couple of times and then eventually going back to 1.5, somehow it worked out in the end because Gavin has now been at 1 mL for about three months.
However, when I even give him 0.9 mL, within three days I can tell something has happened. He takes about three hours to fall asleep even though he takes clonidine, or he’ll wake up every night at 3 AM.
And it’s just the smallest, tiniest little line on the syringe.
If you decrease that little bit of liquid, that much, he has a big issue.
So even though I specifically asked the doctor about getting Gavin off risperidone and whether he has experience supporting that — as in, are there other medications Gavin can take at the same time to help support him during the withdrawal? — I guess I already know at least part of the answer.
I asked his other doctor about this, too, and she couldn’t really help me with it.
Another part of the video from Alternative to Meds talked about how risperidone blocks dopamine receptors over time. I don’t know what that means for Gavin’s receptors specifically, or what has actually changed in his brain after all these years. I really have no idea. But it’s something I’m determined to understand better this year because we can’t all keep living like this anymore.
L is 14 now, and he doesn’t really find joy anymore in our life at home. He’s in his room a lot playing with his friends. I feel terrible about it. He doesn’t want to go out with me and D as much to do anything. He did have his friends come over a few times but I left with Gavin during those times to give them space. And so I wouldn’t have to feel bad that his friends heard Gavin make all the sounds he makes.
In the past, we would go out with him so much. We would take walks, go to different parks, go to different nature places when we were in Oregon. But here in Texas, it’s a different climate, so we haven’t been outside as much. Now that it’s fall, I’m hoping to coerce him into leaving the house more often.
Now my thoughts are all over the place.
I’ll definitely be updating soon if I get a message from that doctor I found. I really want to talk to him about Gavin because he has been a psychiatrist for kids for over 25 years, maybe longer, maybe almost 30 now. And he knows a lot about antipsychotics.
I really want to have a discussion with him, and I want him to know all the pieces about Gavin. I’m hoping to get referrals to some other doctors about the issues Gavin has with even something like walking. His walking is different. The way his body communicates with his brain seems different. I just feel like there is more going on that needs to be understood.
I also need to do more genetic testing.
So I guess the whole thing right now is that I’m trying to open up every single possible avenue for him so that I know I tried my best.
Because right now, I feel like I tried my best when he was little, even though I didn’t fully know what to do. I had all these great ideas and read about all the things I could try. I mean, we even did the stem cells that one time.
But I just feel like what is really going on with Gavin was never actually figured out. We just kept putting Band-Aids on top of Band-Aids on top of Band-Aids.
And the patience I got from “raising” Gavin has been a blessing and a curse, because when you’re patient, you’re able to “wait and see” for a long time.
And sometimes you wait and see for longer than you’re supposed to.
I definitely did that with Gavin.
When he was first diagnosed with “autism”, I didn’t just jump into one thing. We went to all these therapies and all of these appointments. He had B12 injections. Supplements. Outside time with me out the wazoo. There were so many things. I tried everything at that point when he was little. We did every possible thing we could think of.
Then I think it was around late 2022 or early 2023 when I just felt exhausted by autism. Exhausted from talking about autism and going places because of autism.
During COVID, Gavin couldn’t go to therapy and L wasn’t in school. It wasn’t a horrible time. I’m not saying it was bad. It was just a lot.
I always enjoyed having them together and having them at home. Nothing was horrible. I mean, not being able to sleep was always horrible. And Gavin making the noises he makes in the mornings and me leaving every morning to go to a park at 7:30 AM so everyone else could sleep — that was not good.
But overall, nothing was horrible.
So I think that’s why at some point I just felt exhausted.
I remember during 2023 and 2024, Gavin was going to a new ABA place, and at that point I was kind of just letting things flow and letting things ride. I was letting Gavin go to ABA full-time. I was trying to think about myself and D and L for a change, front and center.
In the past, he would go to ABA for part of the day and then come home, or I would take him to a speech therapy place one morning, and then the next day he would go to an occupational therapy place in the afternoon. So I was bouncing around a lot.
So in 2023 and 2024, I remember I just took a break from all of that because at that point he was going to the new ABA clinic. The other clinic had closed.
The old place wasn’t that far from our house, just over the bridge, but the new place Gavin had to go to was in Beaverton.
If you’ve lived in Portland and had to drive to Beaverton, you know that if you go there twice a day, you’re going to spend hours in your car because there’s so much traffic.
So that whole ordeal of driving Gavin to ABA, Monday through Friday — sometimes an hour there, almost an hour back home, 45 mins to pick him up, and another hour back home — made me really tired.
At that point, for those couple of years, I kind of chilled out when I was at home. I tried to be a photographer sometimes too. But life was just passing us all by really.
Then in July 2024, we decided to move to Texas.
The schools in Portland for L just weren’t feeling very amazing. They felt too laid-back. Plus, where we lived, there was crime going on. It was Portland crime, if you know what I mean. There would be strange characters on our street, around our house, or down the street. You just never really felt completely safe.
It was also depressing seeing so many people having such serious issues every day. You would see it on the sidewalks just driving around.
It’s already hard having a child with autism. It’s hard to also feel depressed every day and sad about humanity every single day.
We thought about maybe moving to Beaverton, which would have been a different environment where we would see less of that. Or we would have been close enough to L’s school and he could have stayed at that one, but we were not loving it. We kept wondering: Is it worth moving to Beaverton or somewhere nearby? Should we stay in Oregon?
Then I kept thinking about how my dad lives in Mississippi. If we moved somewhere else, we could be closer to him, go somewhere with different schools, and maybe it would be a better situation. We figured out that Texas would be an interesting new path in life to try out.
So far, Texas has been a better situation as far as schools.
But what we miss about Oregon is the nature. And I miss all the familiarities and the life we used to have. I miss how Gavin and L were. You can’t get that time back. You can’t get the way they were, back.
And I miss how I knew all of L’s friends when we were in Portland. I knew all the parents. It wasn’t like we were best friends yet, but it wasn’t a big deal for all of us to gather at someone’s house to go trick-or-treating or for L to stay at someone’s house for a few hours after school. He could walk to one of his friends’ houses from school. And most of the parents were already comfortable with me driving some of the kids around to and from places. I remember feeling just so connected and at peace with the connections we had. Sure, L had issues sometimes with his friends, things were not always perfect, but thats how friend stuff goes, and school too. But it was all fine really. We were comfortable.
I don’t know. I just miss that cozy feeling of knowing everybody.
Since we moved to Texas, I’ve only met the parents of one of his friends. I haven’t met the parents of most of his other friends yet, and L has only had friends over a couple of times.
Things just aren’t as cozy as they were.
That is probably the saddest part about it. I feel very disconnected from his life because of all of this.
When we were moving, I didn’t fully realize how that would feel if it happened. I didn’t even expect it to happen.
I thought we would come here and I would do the same thing I did in Portland. I thought I would go pick L up after school, stand outside, maybe see the other parents standing there, and eventually get to know everybody.
But it turned out that at the school L goes to, no one stands outside waiting for their kids. We’re all in cars. There are car lines.
There isn’t anything cozy about it.
I remember the very first day I took L to school for the first year, I walked to the front entrance and there were a couple of other parents there, we talked a little bit, and some teachers were outside too, but then we were told we were too close to the door because it was a safety thing. The next day I tried it again at pick up time, a few of us were there, but then some staff told us to go to the end of the building, far away. Eventually the parents didn’t go anymore, and the following school year, I didn’t see parents outside even on the first day. It’s almost like the new rules had been made just at the specific time we arrived. So I missed out on any connections in that way to start things out.
So it’s just not as close as it was there.
There are pros and cons to everything.
The doctor got back to me too – he nicely said that he doesn’t see outpatients. He wished us best of luck. I guess I have to wait for that December appointment now, at 8 AM, with a doctor I don’t know the name of yet. I’ll find out tomorrow and see what’s going on.
Anyhow, Gavin is on his last dose of lamotrogine this week. On Sunday it will be done. We’ll be back just on risperidone, clonidine, and the new vitamin powder.
He didn’t want to go walk in the park today, or yesterday. It’s unusual. He also started to put his foot on me in the car again, but not aggressively. He hasn’t done that in a long time – I would say four months but I would need to check the logs I keep of his behavior. I think he may have pressure inside. Sometimes having slow motility makes his behaviors increase, because he is trying really to tell me something. I gave him corn fiber. Hopefully he feels more comfortable tomorrow.