bookmark_borderOur First Day at Rogers was disappointing. Part 2 in a series about our experiences there.

A person's arm is tilted upward showing the face of a watch.  On our first day at Rogers Behavioral Health, we spent over 5 hours waiting with nothing to do.
Our first day consisted of over FIVE hours of waiting, doing nothing related to the program. Photo by JÉSHOOTS from Pexels

Our first day at Rogers was disappointing. Little did I know it was a foreshadowing of what was to come. (This is part 2, part 1 is here.)

If you read my entries prior to arriving in Chicago, you know how hopeful I was to be going. You know that I was excited to be working with a team of professionals who had extensive experience helping autistic teenagers with depression and anxiety disorders, including OCD. I was ready to do the hard work alongside those professionals, to learn all I could from them, and to support my son during the challenging hours, days, and weeks of therapy. I was willing to suffer the separation from my family because of the hope that was offered.

I had another virtual appointment with the intake coordinator the day before our start date. She went over some logistical things, including what time we should arrive, that we would go through a brief covid screening each morning, that we would have to remove our own masks (because we wore them in the lobby and elevator) and then wear disposable masks provided by Rogers. She informed me that we would need to wear these masks all day. She told me to bring our lunches as we would have only thirty minutes for lunch. The intake coordinator also told me to bring some type of device to use for any virtual appointments we would have.

We arrived at 8 am, as directed. We did the brief covid screening, took off our personal masks, and put on the disposable masks provided by Rogers. We were led to a very small room which had 3 chairs, a very small table, and a small whiteboard on the wall. And we were left there.

After waiting awhile, someone named Cathy (not her real name) came into the room. She said we had a virtual appointment with a nurse and I needed to use the link waiting in my email inbox. So I asked for the Wi-Fi password and logged in for the appointment. The nurse asked us questions about my son’s health history for about 15 minutes. When that was done, we waited again before being taken to another room to check my son’s vitals. Then we were taken back to the little room to wait some more. And wait. And wait. And wait.

Cathy back back into the room. She said hello to us and said she was going to talk to us about cognitive behavior therapy (CBT). She drew a triangle on the whiteboard and wrote three labels: thoughts, feelings, behaviors. My son said that he knew what CBT was, that a previous therapist had taught him about it, and he went on to explain for a few minutes what he knew. Cathy replied, “Wow, that’s great! You know a lot for being 14. I didn’t know about this until I started working here.”

I found that last statement concerning. It was at this point that I looked closely at her name tag. It read, “Cathy, Mental Health Professional.” Over the years I have observed that licensed therapists always have some kind of alphabet soup after their name– LPC, LFMT, LCSW, etc. Some grouping of letters that represent their certification and the letter L, indicating that they are licensed by the state. There were no such letters after Cathy’s name. This was concerning. However, I thought that perhaps Cathy was in some sort of para-professional role. I figured that the actual work of therapy would be done with a licensed therapist. Unfortunately, that was an incorrect thought. It would take the next morning to confirm my initial concern was valid.

Cathy left after this, leaving us in the little room again, with nothing to do. She came back a short while later to tell us that we were free to leave for a bit, as we had two hours until our next appointment. We had been in the building for four hours already. Only one of those hours was doing something other than sitting and waiting. While I was glad to get out of that tiny room, I was getting increasingly frustrated at the disregard for our time and for our finances. Rogers bills $600 per day for this program and so far they had not earned much of that, in my opinion.

We went to lunch, trying to fill two hours of time. We were not supposed to have any interaction in public areas or even with friends so there wasn’t a whole lot we could do. It was a very pleasant early autumn day, though, so we sat in our car with the windows open.

When we arrived back to our little room, Cathy came and apologized that our next appointment was at 2:30, not 2:00, so we had another half hour to wait. My frustration with the disorganization and disregard for our time was increasing. However, I was convinced that this was only because it was our first day.

At 2:30 we had a virtual appointment with the psychiatrist, who was working remotely. It was a very good appointment and I liked her and was looking forward to working with her. One of the very first things she said was, “I read your son’s intake and these are the additional questions I have.” This statement is highlighted in my memory for several reasons. One of them is that she was the ONLY staff member at Rogers who said she read my son’s intake. While the other staff members could have read it without stating so, they indicated in various ways that they had NOT read his intake. We were headed into very troubled waters, very soon. I was about to entrust my fragile teenage son to people who knew almost nothing about him and didn’t seem to care that they knew almost nothing about him. The staff members believed it wasn’t important for them to read his intake or get to know him in any way before doing “therapy” on him (not with him).

The appointment ended at approximately 3:30 pm. We were exhausted. Not the kind of exhaustion you have from a day of work done well. We were exhausted from the anxiety and boredom you have from sitting in a little room with nothing to do, wondering what is going to happen, wondering what others have planned for you.

Our first day at Rogers Behavioral Health was extremely disappointing. No doubt about that. I texted my husband, “We were here for almost 8 hours but everything could easily have been accomplished in 2 hours, if the process had been even moderately efficient.” I was disappointed for certain. But I fully expected the next day to be better. Much better! It had to be better. We had come all this way and the program promised so much.

To be continued. This is post 2 in a series. Here is post 1, if you missed it.

bookmark_borderOur negative experience at Rogers Behavioral Health in Skokie. Part 1.

Pink  and orange background showing a person with their thumb pointing down.  The lighting make the hand look purple.  I give Rogers Behavioral Health in Skokie a huge thumbs down.
I give Rogers Behavioral Health in Skokie, Illinois, a BIG THUMB DOWN. Photo by cottonbro from Pexels

I almost deleted this blog entirely but I feel obligated to share our highly negative experience at Rogers Behavioral Health in Skokie, Illinois. This will take some time and several blog posts. And I will have to think carefully about how much I share because this involves my son’s privacy, not just my own. But there is far too much wrong with that program for me to remain silent.

Why I chose Rogers Behavioral Health in Skokie, Illinois: There are PHPs (partial hospitalization programs) and IOPs (intensive outpatient programs) in all major cities across the US. We do not live in a major city but we made the commitment for my son and I to travel to one of these programs, leaving behind the rest of our family and our home. We wanted to get intensive treatment for OCD because there are no OCD specialists within 100 miles of our home. I knew that driving more than 100 miles each way for 50-minute weekly appointments would be a major disruption to our family and the results would be a long time in coming. Going to an intensive program would, we hoped, bring about an earlier reduction in symptoms and then we could follow-up with weekly appointments back home.

So, why did I choose the Rogers Program in Skokie? Because they promote their program as being specifically designed for adolescents with level 1 autism who suffer from depression and anxiety disorders, including OCD. I called other PHP programs in cities that were much closer to us. All of the people I spoke to said that had had autistic teens at one time or another but their program was not specially designed for autistic teens. It seemed to me, that if we were going to make this huge emotional and financial sacrifice, to go the program that was the best fit.

Unfortunately, I was horribly misled about the program. We had a highly, highly negative experience at Rogers Behavioral Health. My son’s exact words were, “Mom, you got scammed.” I cannot disagree with him.

Approximately three weeks before we arrived, and before he had been admitted to the program, I had a phone appointment with the intake coordinator. She said to plan on the phone appointment being 2 1/2 hours and that is how long it was! I sat outside, on my porch, out of earshot of all my children so that I could speak freely. She asked very good questions, starting with symptoms in childhood, what therapies and therapists we have utilized over the years, current symptoms, current issues, current health concerns, current providers, current medications and supplements. It was incredibly thorough and I talked a LOT. I gave very detailed answers. I had every reason to be as thorough and honest as I could and no reason whatsoever to hold anything back. I needed them to have the full history and background. They needed to have a complete understanding of the current situation so they could make a fully informed decision about whether to admit my son to their program.

The LAST thing I wanted to do was to leave my family, drive almost 2,000 miles across the country during a pandemic, pay $5,000 (non-refundable) for an AirBnB for us to live in for 2 months, only to get there and find out that the program wasn’t a good fit after all. I was honest and told her everything.

I also asked her questions. I asked about the daily schedule. I was told that it was six hours a day, usually 8:30-2:30. I explained that my son was homeschooled, that he had always been homeschooled,. I anticipated that the long day would initially be tiring for him. I said that I hoped the therapists working with him would understand that he’d be fatigued the first few days, not being used to that kind of schedule. (Frankly, I think that even teens accustomed to a regular school day would be fatigued by six hours of intense therapy!) She responded that of course they would be understanding, they knew he would have an adjustment period to the program.

I also asked how much of the day was group time and explained that I anticipated my son having trouble in a group situation. First, because it would likely he’d get distracted and not pay attention. Second, because he is very self-conscious, both because of normal teen issues but also knowing that he is different than other kids. Third, being homeschooled, he is not accustomed to the noises of being in a classroom setting. He used to be much more social. He used to participate in homeschool co-op, ski school, Cub Scouts, etc. In recent years, however, he has withdrawn more and more from social settings. This was another reason we wanted intense help now. Fourth reason, two of his huge OCD triggers are people coughing and clearing their throats. People clear their throats all the time without realizing it. Some people clear their throat every time they start to speak. During the intake, I explained that this was a huge trigger for my son and that the people working with him needed to be aware of it. I anticipated him being triggered either in group or individual therapy. Frankly, anyone reading his intake should have forseen that without my even mentioning it. But, alas, as I will explain in another post, only one staff member at Rogers in Skokie read the intake and she was remote and did not interact directly with my son.

The intake coordinator told me that the day consisted of two group sessions, three hours of individual/family therapy, lunch, and a 45 minute education time. I asked what happened during education time. She stated that the person running this group contacts the school to get suggestions on what to work on. The purpose is so the teens to have a smooth transition back to school, emotionally, and without getting too far behind in their academics. She stated that since Simon is homeschooled, the person would discuss it with me. I asked if I could just use that time to work on assignments with him. I’m his teacher, I have all his books, I know his program, I know what he needs to focus on. She stated that yes, the could be worked out.

I was nervous when the call ended. I wondered if they would not admit him, stating that his symptoms were too severe. But, I also felt hopeful that, if they did admit him, that he would be in excellent hands because I had told her EVERYTHING. So, if they admitted him, I believed it would only because they had experience with others like him and had been successful.

My son was admitted very soon after and we started making plans to leave.

I only wish I had dug deeper. I wish I had known that others had a negative experience at Rogers Behavioral Health and that we were at high risk for a poor outcome, also.

To be continued. Part 2, our first day.

bookmark_borderWhere we are going and why.

An older apartment in Chicago with exposed brick has been updated and decorated with modern furniture.  We will stay in something like this for several months for the OCD program.
I rented an AirBnB in Chicago for two months. I will be attending depression and anxiety (including OCD) treatment with my son at Rogers Behavioral Health in Skokie, Illinois. Photo by Chait Goli from Pexels

My teenage son and I are leaving in a week. We’ll be gone 3 months, at a minimum. We are heading to Rogers Behavioral Health for one of their PHPs (partial hospitalization programs). I will be leaving my 4 other children home with my husband, 2,000 miles away. It goes without saying that we would not go to this level of disruption and expense if we thought another option was viable. I found this program very recently and this all transpired very quickly.

The long and winding history will have to come later. Our autism story is not typical, at least not typical according to the literature (but I’ve met plenty of parents with a story similar to ours). But I’m going to start in the middle, as what is happening now, travelling for this program, is the reason for my blog.

The particular program we are going to is only available at 3 locations in the USA. Skokie, Illinois (a suburb of Chicago), Tampa, Florida, and San Francisco, California. It is a program to treat depression and anxiety disorders, including OCD, in adolescents with level 1 autism. If you have a teenager that fits even one of those criteria, then know that I understand the pain, exhaustion, frustration, and despair that you can experience on any given day. On any given day you may also experience great joy and hope. But, for those of us who love someone with depression and an anxiety disorder, the pain and despair take over our lives. We soon realize that this goes far beyond any idea of normal parenting. We are way out of our league. We lose the ability to relate to other parents who may argue with their teens about homework or screen time. We need help, professional help, and not just a counselor. Finding someone with specific training for OCD is incredibly hard. When that person is also autistic, the ability to find professional help gets that much harder.

When I was trying to find real help that would make a difference (50 minutes a week with a counselor just doesn’t cut it) I didn’t even know what to search for. Years of accessing everything that was available locally didn’t help at all. And our son was drifting farther and farther away, to the point where we were feeling like we might never reach him. He was giving up hope, also, of ever living a life that held meaning for him. OCD and other forms of anxiety were taking over. Local counselors cared but talking about it did nothing but bring on a weekly battle to get him in the car to go. Medications helped some with the severity of his depression and have kept our son out of the emergency room. I was calling every single counseling and psychiatric clinic within a 100 mile radius of our home and not finding anything other than 50 minute weekly appointments. And 90% of the places I called said, “I’m sorry, that is beyond the scope of our practice.” There is an idea that if your teenager has problems, and they get accurately diagnosed, that help is available. It is not, or at least it’s not readily available. Regular counseling or even regular CBT is simply not enough to treat OCD. Regular counseling is not enough to treat depression in someone who is autistic. I would sink in despair, realizing how truly alone I was and how utterly incompetent I was to help him with these complicated disorders.

My son’s world was getting smaller and smaller as he lost interest (or couldn’t get past the anxiety) in things he used to love. He rarely left the house. In some ways, it was a relief because I could take my other children places without worrying that this particular son would have a meltdown in public. But this wasn’t the life we wanted for him! My world also became smaller and the number of friends I could truly confide in shrank drastically. Only two friends have an idea of the severity of my son’s disorders. My marriage has also suffered. My husband often placed blame on me for not “doing more” or “handling things better.” I had to become a buffer between my son’s irrational behavior and the rest of the family. Loneliness became a way of life. I no longer had any personal dreams or aspirations. No thoughts about what I’d do when I had an empty nest. My sole purpose in life became to see this son reach some level of health and wholeness. Then I’d be okay to die.

Then I found Rogers Behavior Health and their program specifically for Depression, Anxiety (including OCD!) for autistic adolescents. Rogers has an incredible reputation for treating OCD and eating disorders across the country. Yet I was very nervous about this program. The program is 6 hours per day, 5 days a week, for 6-12 weeks. I was told that the average program runs 8 weeks. We would have to travel and pay for housing almost 2,000 miles from home. I would miss so much with my other kids. I’d miss my friends, my home, and whatever was left of our routine (OCD often calls the shots without professional help). Would I cause all this disruption and spend all this money just to come home no better off? Would he even be accepted?

If you’ve read this far, you may know what it’s like. I just had to try. I couldn’t keep going on year after year hoping things would improve. Hoping that a little more maturity would help. Hoping that maybe occupational therapy, medication, and counseling would actually bring about a big change. I had to come to grips with the fact that every year was harder than the year before, that the 3 supports we had in place could take him no farther without more specialized help, and that we just had to give this program a try.

So, we’re heading to Chicago. I have an AirBnB booked for 2 months. (I was told the average person spends 8 weeks in the program. If it turns out we have to stay longer, we’ll figure it out when the time comes.) We have to quarantine for two weeks before he can start and we’ll do that at a family member’s empty house (they graciously offered to delay the sale of their home by 2 weeks so we could do this). And the drive is 3 days each way. So, we’ll be gone for 11 weeks, minimum. We’ll miss Halloween and Thanksgiving. But I’m very hopeful we’ll come home with our boy back.

OCD is a thief. It tries to take your whole life away. It isn’t about liking things neat and orderly. It isn’t about being meticulous or detail-oriented. It isn’t about a very strong preference for symmetry and organization. OCD is a disorder the destroys individuals and families. And we’re going to kick it to the curb in Chicago and leave it there.

If you have a child or loved one who suffers from any combination of depression, OCD or other anxiety disorder, and/or is autistic and really struggling, feel free to read along with our journey. If you comment, I will do my best to reply. Know that YOU ARE NOT ALONE. Your pain is real and you are worthy of help. Talk with you soon.