Summer has started, but my summer has not gotten off to the start I had planned or hoped for. My son is in-patient again, for the third time in three years. It doesn’t get easier, so in this episode, I’m talking about mental health hospitalizations for children with Autism, specifically ER visits, in-patient hospitalizations, and partial hospitalization programs.
The first time my son was hospitalized, I knew absolutely nothing about mental health hospitalizations for children with Autism. However, hearing stories and experiences from other people really helped me, so my hopes are that what I’m sharing today will be useful for you if you ever have to deal with your own child being hospitalized.
Tune in this week to discover how to handle a mental health hospitalization of your child with Autism. I’m sharing some of the surprises that have come up for me when my child has been hospitalized, how to be clear-headed in your decision making, and some important lessons from three mental health hospitalizations in three years.
You are listening to episode 68 of The Autism Mom Coach, Mental Health Hospitalizations.
In this episode I am going to talk about mental health hospitalizations for kids with Autism, specifically ER visits, inpatient hospitalizations and partial hospitalization programs. If this is something you are interested in learning more about, keep listening.
Welcome to The Autism Mom Coach podcast, I am your host, Lisa Candera. I am a lawyer, a life coach, and most importantly, I am the full-time single mother of a teenager with Autism and other comorbid diagnoses. I know what it is like to wonder if you are doing enough or the right things for your child and to live in fear of their future.
I also know that constantly fueling yourself with fear and anxiety is not sustainable for you or of any benefit to your child. That is why in this podcast I will share practical strategies and tools you can use to shift from a chronic state of fight, flight to some calm and ease. You are your child’s greatest resource, let’s take care of you.
Hello everyone and welcome to the podcast. I hope you are doing well and that you are enjoying your summer. If you have been listening to this podcast or following me on social you probably have gathered that my summer is not off to the start that I had planned for or had hoped for. My son is inpatient again. This is the third time in three years and it does not get easier but I definitely know a lot more than I did three years ago. And I want to share just a bit about that because three years ago I knew nothing about mental health hospitalizations for kids with Autism.
In fact it was only because I was following a woman on Facebook who was sharing her son’s journey with inpatient hospitalizations that I really knew that this was a thing. And it was because I reached out to a stranger on Facebook. And this kind stranger actually called me up and walked me through it, that I had a roadmap for what to expect when my son was first admitted inpatient. So to the extent that this is helpful, I’m sharing this with you.
I just want to back up and acknowledge that hospitalizations for children and teens with Autism, it’s not uncommon, but of course, the fear of these events and the stigma attached to them is so real. No one wants to call 911 on their own child. No one wants to make the gut wrenching decision to admit their child inpatient, but still these are the decisions faced by so many of us. If this is you now or in the future you are not alone and for sure you’re not alone talking to me as I have been through this three times in three years, so here we go.
First hospitalization happened in September 2020. This was right after the height of the COVID pandemic. My son’s mental health had really deteriorated following the school shutdown and by September he was afraid. He was scared to death of going to school and it showed, every day he just struggled to get through the day. The staff was trying to make his environment smaller and smaller for him. Still, all these prophylactic measures just were falling short of his needs and he was terrified.
And so just one day in the school dropout line, he refused to get out and the school staff came over to try to coax him out and he was having none of it. And that’s when it began, the self-injury, the threats of suicide. And that resulted in an ambulance being called and our first visit to the ER. I mean I was like, “This is kind of overkill. He is just really nervous about school. We don’t need to go to the ER”, but we did.
And shortly after, the medical staff there were satisfied that he was not going to hurt himself and that his anxiety was just due to school and that maybe we just needed to do some more things to make him more comfortable and things would be okay. But next day, back at it again but with more of a dramatic flair. And so this time my son actually eloped from the school. He was hitting his head against the ground. The ambulance was called and we were back in the ER.
And this time the medical staff was not prepared to let him go, given the fact that it was back to back and that he was still making statements of self-harm. And this was the first time that inpatient hospitalization was brought to my attention and I was completely baffled by it.
I could not even imagine it, but given the escalation in his behaviors, given the fact that other supports were falling short, it was something that I needed to consider. Especially because his clinician and the psychiatrist were very much of the mind that if we didn’t do something now, we would just be repeating this over and over, which of course is something I didn’t want.
Alright, so just here’s the deal backing up. If you go to the Er or the ED with your kid for a mental health issue, they will assess immediate harm right away. Are they a harm to themself? Are they a harm to others? If they can clear both of those hurdles as a no, they’re probably releasing then on the spot right away. If there is concern that they are a harm to themselves or to others, then their question is, where next? And this is inpatient hospitalization for most kids. And so then the decision becomes, which hospital?
And so for us at that time, no, we were given the options and it was the general psych ward of a local hospital where my son at the age of 13 would be placed in with kids, I think as old as 18, maybe 19 or 20, which I was completely against. I wanted him with younger kids because even at 13 he was really like 10 or 11. And then on top of it, these general psych wards, there’s no focus or maybe even awareness of Autism and the impact that that has on his mental health. And so that really weighed for me against that as an option at all.
And so I was about to be a complete no on this until the social worker told me about a program that was specifically for kids with Autism. And this is The Hospital for Special Care in New Britain. This is their Autism inpatient unit. And so I took a look at the unit and I discussed it with my clinician. And so this is the decision that I made to go inpatient with my son. I was definitely wavering on it. It was more like, let’s try this. I don’t know what else to do but I don’t know that this is the right thing. In the meantime my son was enjoying the ER because he was on a floor with kids his age.
He was socializing for the first time in a few months. And there was no expectations and so in his mind, hey, if hospitalization is like this, sure, I’ll go inpatient. Let me tell you, that is not what inpatient hospitalization is like and he did not know that but he came to find out. So first hurdle cleared, I found a place.
Second hurdle, insurance. So this place is not a network from my insurance company but because of my son’s need and there being no other comparable place within the whatever mile radius, they granted a single case exception. So second hurdle cleared. We had a place, we had coverage. And then third, they accepted him and they accepted him within a couple of days, which was really great. We weren’t hanging out in the ER for weeks, which can happen and does happen for some kids, especially happened during COVID.
So I follow the ambulance to the hospital. He gets to the hospital. He gets situated. I have to go talk to the social worker. She gives me a rundown of all the rules. And one of the things that she’s telling me about are restraints and the different levels of restraints. And I was like, “Yeah, you can just stop right there. You don’t need to go through all of this with me. You don’t understand. My son, he’s a rule follower. There’s just no way he’s going to be a problem. I mean if anything he’s going to be helping you out with the other kids.”
Oh my God, this is actually what I was thinking at the time because not my kid. And really not from a place of being naive or in denial, but to this point this was not my experience of my kiddo. Well, let me just tell you, three hours later I get a phone call from the hospital and I’m thinking it’s a goodnight call. No, it wasn’t. It was a, “This happened, he was restrained in this way”, and there was update to me and I freaking lost it. I lost my shit. I was like, “What are you talking about? That is not how he behaves. He does not behave like that at home. You’re supposed to be helping him.”
I was losing it. And my instincts were that I wanted to just get in the car and rescue him, get him out of there and fix it myself, which I had been trying to do for years and had not worked. And so luckily I did not do that. I was able to regulate myself. I was able to calm myself down. And so that’s not what I did, but I’ll just tell you. The first hospitalization was really hard. I was wavering in the decision, I wasn’t sure about it. And my son definitely sensed that and he was crying every day to get out.
And I was almost apologetic to him that he was there in the first place, losing sight of the fact that I had made this decision for him, not in spite of him. But still, I was really unclear and I was just really having a lot of guilt and shame and it definitely got in my way of being able to be clear headed in my decision making and clear headed in my execution. So first hospitalization is down, he comes home, he returns home to in-home supports. The therapy that we were doing before, all of it.
But now my kiddo is on medications that he’s never been on before and he is a mess. I mean he was just really physically aggressive during this period of time to me, to school staff, to anyone. And that lasted for four months. It was the hardest four months of my life. I’m not really sure how I got through it. I have a lot of great friends, a lot of great supports. He struggled, I struggled and every day that we didn’t go back to the hospital was a freaking miracle, somehow some way we made it four months before the next hospitalization.
It really could have been returning him the next day, he was that dysregulated. So back to the hospital for round two. Round two was similar to round one in the time, he was there for four weeks but I was very different. I was very clear headed in my decision that this was the next right decision for him. I was much more involved with the doctors and understanding what was happening. I was less in a fog like I was the first time.
But during the second time they made a significant medication change. The aggression went away, which was fantastic. And instead of him being released solely to home this time, when he was released the second time they actually had a partial hospitalization program that they had just started with this hospital. So a partial hospitalization program is like a step down. So after inpatient you sort of, you graduate but now you’re coming back to the hospital four days a week, four hours a day. You’re getting therapy, eyes are on you.
So if there’s medication changes they can be observed. If there’s medication changes that need to happen, they’re happening in real time. And so that was really great for me because one of the most difficult things about a hospitalization is that you go really from all to nothing very quickly and so this was a nice transition. So by the end of that half hospitalization, the end of that transition, the aggressive behaviors were gone but OCD, it flew out and it took center stage for the next year and it was severe. And so then the focus became how are we going to treat the OCD?
And so we did a little bit of everything. We did group therapy with an anxiety clinic for children with anxiety and OCD. We did one-on-one therapy with that therapist for my son. We did family therapy my son and I for eight weeks with DBT, so that’s dialectical behavioral therapy. And so that is teaching emotional regulation skills, distress tolerance. We did all of that while waiting on a waitlist for intensive OCD programs. And we finally got into Bradley Hospital in Rhode Island. They have a partial hospitalization program for OCD.
And so we got there, this was August of this past year and we were there for three months. So the gold standard of treatment for OCD is exposure response prevention. But of course with everything Autism, nothing is straightforward, including the treatment of OCD in a person with Autism. And so my son, his trigger as the doctor said was ever present in his brain. So he didn’t really need an exposure. And so his therapy became more focused on tolerance. And so the therapy that they used, or the modality that they used the most was ACT, it’s Acceptance and Commitment Therapy.
And so that was teaching my son how to notice the OCD thoughts without attaching to them. And so then of course I had to learn about it. And I studied it, and we were implementing it. And so we spent three months hardcore in that. As a side note, because of my own studies for my own continuing education as a life coach and all the work that I do with family therapy and with my son. When I coach my clients I grab from all of these different modalities. It’s not one size fits all. I don’t just use the coaching model. I use ACT. I use DBT.
I use things from cognitive behavioral therapy, polyvagal informed tools, all of it, whatever works, works. And I just do love the idea of being able to be flexible in what I provide to my clients because I have found that more is better when it comes to tools. And I’ve definitely found that with my son. Anyhow, after three months in a partial hospitalization program for OCD we were back home. And at that point, that is when I enrolled my son in the school in Utah. And I talked about that in the last episode. Utah did not work out and my son was hospitalized in Utah until he was released home to me.
And the reason he was released home to me instead of to another program is because we couldn’t get another program to take him because of some of the behaviors. So then the solution was to come home to me. And so for a month it was me and my son and we were doing pretty well. I was keeping him occupied as much as I could. We were taking a lot of bike rides, hikes, that kind of thing, but containment can only work for so long.
And as my son’s anxiety was growing and growing, especially as he became more bored, as he was more uncertain about what his next steps would be, there was an explosion. And that explosion ended up in me calling 911 and he was hospitalized in the ER. And then shortly after, actually this week he was readmitted to the hospital for special care where he is now for a third time. So three years, three hospitalizations and I’m still standing and so is he.
And so I share this just to be like, if you’re going through this, you’re not the only person. And I also want to share that I am a different person than I am three years ago. Now, I was a basket case during his first hospitalization, but I will tell you, I grew up very quickly after that and there was a big shift. I think there was a big grieving process for me but there was a big shift. And actually for those of you who don’t know it, those four months between those two hospitalizations when there was a tremendous amount of aggression in my own home.
That is the genesis for my entire coaching program, the solid object, how to be the solid object. How to be the steady in the storm. How to keep your cool while somebody else in your household, in your ecosystem is constantly losing their shit. This is where it all came from. And that was my work for those several months is learning how I could be okay, even if he wasn’t because guess what. If I wasn’t okay then nobody was at the helm of the ship so to speak, nobody was in charge. And somebody needed to be in charge. Somebody still needs to be in charge.
And so out of all of that came what I give in this podcast that I provide to my clients, what I teach and what I continue to learn is that there is a lot of hard that we experience in this journey. And our work is not just to serve our children but it’s to take care of ourselves. And that can be the hardest work because it’s the work that we want to ignore because we are so hyper focused on our kids. But that first hospitalization in some ways, that was the time I, in retrospect, should have been taking a breath and catching my breath but there was really no time for it.
First of all, I was just grief stricken. I was shocked but I was also on a mad tear to try to find him another school that he could go to when he got released. And so I was busy the entire time. It wasn’t until that second hospitalization that I really had a minute where I really took the time to recover. That piece is so important. And I say this to my parents all the time, “When you are in a crisis situation with your child, you sleep when they sleep like when they were infants.” You need to be able to regain your strength, to regain your sanity whenever you can.
And so if there is any upside to hospitalizations, sometimes it is that respite that you get, especially if you’re a parent who is on 24/7, if you are always on hypervigilant, high alert, at least you get to give yourself, give your nervous system a chance to come down a bit.
Alright, so that’s it this week for hospitalizations. Again, I hope this was helpful. I really can’t emphasize enough to all of you how pivotal coaching was for me as a client at this period in my life. It really was the difference between me getting kind of lost in the grief and the sadness and the hopelessness versus becoming the solid object that I am, that I am to my child, that I am to myself and that I hope to be to others. This does not mean that I don’t have my bad times.
It doesn’t mean that I didn’t spend yesterday under the covers most of the day crying, hiding. I gave myself a day, let it out, but I don’t stay stuck. I don’t stay there like I used to before. And I know that part of that is the power of coaching and what it has done for me as I’ve practiced it and the things that I teach over the years. So if this is you, if you are struggling, if you need this helping hand to support you through the anxiety and the overwhelm that you’re feeling, no matter if your child is in the hospital or sitting right next to you, this is what my one-on-one coaching program is for.
If you want to learn more, if you want to implement the things that I’ve learned and that I teach my clients in your real life, now is the time. You can schedule a consultation on my website theautismmomcoach under Work With Me. Alright, that is it for this week, I will talk to you next.
Thanks for listening to The Autism Mom Coach. If you are ready to apply the principles you are learning in these episodes to your life, it is time to schedule a consultation call with me. Podcasts are great but the ahas are fleeting. Real change comes from application and implementation and this is exactly what we do in my one-on-one coaching program. To schedule your consultation, go to my website, theautismmomcoach.com, Work With Me and take the first step to taking better care of yourself so that you can show up as the parent you want to be for your child with Autism.