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.