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_borderThe first night away from my children.

We had made it 550 miles towards our destination, we were exhausted, and it was my first night away from my children. I almost turned around and drove back home.

The day had gone really well. We left two hours later than I’d planned, but it was just as well because I had more time to hug and say goodbye. My son’s sleep has been incredibly erratic and he had been awake since 3:30 that morning. I was tired, too, and we took things slowly as we got ready to leave.

The drive had gone smoothly. As soon as we got through the first mountain pass, the wildfire smoke that has been plaguing the west started to thin. My son wanted to stop for lunch at Red Robin. I had hoped for something a little faster, but it was nice to be out of the car, too.

We made it to our first hotel and my phone rang for a video call from one of my kids at home. I answered to see my youngest, only in kindergarten, sobbing hysterically. It was bedtime. Through the sobs, I could barely make out, “Mommy, when are you coming home? Are you coming home soon?”

I had tried to prepare her as best I could. I couldn’t make a calendar or count down to when I’d be home. I don’t know when I’ll be home. My teen’s program could be as short as 6 weeks or as long as 12 weeks. But I immediately started praying for 6 weeks to be effective.

I was overwhelmed with grief at being separated from my family. I didn’t know how I was going to make it for three months; it hadn’t even been 24 hours and I was falling apart. I didn’t know how I was going to make it through this first night away from my children.

In the midst of those emotions, my brain automatically searches for reasons to be thankful. I thought of mothers who were in prison, who had to be separated from their children for years. Of mothers who had to travel for treatment of life-threatening illness, who had to, somehow, prepare their children for the possibility to grow up without their mother. And I thought of the three mothers I know that buried a child in 2020.

Yes, I would keep putting one foot in front of the other.

My sobbing baby was home with her daddy and siblings. My close friends all have plans to spend time with her, helping her feel special. She is and will be safe and loved.

I have so much to be thankful for.

Thank you, God.

The next day I had three phone calls with her, all without tears. She did ask if I was coming home soon. I wanted so badly to be able to say “Yes! Just a few more hours and I’ll be home!” Saying no, I won’t be home soon, made my stomach tighten into a knot.

Someday, there may be programs like there one we’re headed to in all towns and cities. Someday, this treatment may only be an hour away from our little mountain town. Some day, maybe a mother will be able to say, “Yes, sweetie, I’ll be home soon! I’ll see you tonight!”

bookmark_borderI love my home.

A distant mountain with a snowy peak is flanked by green mountains on either side.  A perfectly still lake acts as a mirror to the landscape and sky.  This is my Home.
Photo by Kevin Bidwell from Pexels

Home, for me, is more than a place. It’s even more than the people who fill it. Home eludes description.

Not every place I have lived has been Home. Some have been mere dwellings– filled with our possessions, filled with the people I love. I organized the possessions, I did all the necessaries, and I loved the people in those spaces. Those places were where we slept, ate, worked, laughed, fought, and cried. But they weren’t Home. Whenever we lived in one of those spaces, I had a visceral, constant ache for Home. It was subtle but it was ever present.

That feeling wasn’t unlike the feeling I had as a teenager, wondering who I would marry someday. Hoping I would meet him soon (and not scare him away). I always knew he was out there, somewhere, and that certainty kept me from settling for less than. Well, whenever we lived in mere dwellings, that’s the same sensation I had. Home was out there, somewhere. That ache that said, “Don’t settle for this.”

We’ve been married almost 24 years. We’ve lived in ten places. Only three of those ten places have been Home. When I think of the two Homes that have been left to our history, it is hard not to cry. It’s not unlike thinking of a loved one who has lived a good life and passed peacefully away. You know that your time with them is done, and that it was Good. Yet, you wish you could go back are re-live some of it, at least a little. You close your eyes and re-play the tape, in your mind.

Thankfully, where we live now is Absolute Home. We discovered it in 2013 and I cried the first time we came up the drive. We’re still here and, God willing, we’ll never leave.

Tomorrow morning I’m leaving it. I’m leaving Home. I’m leaving my husband, four of my children, my pets, my flowers, my garden, my messes, my routines, my favorite spots. I’m leaving dear friends. I’m leaving my early morning walks to the pond with my dogs. I’m leaving the sound of the trains and the crickets. I’m leaving the rustic nature of the most beautiful place on earth. It’s hard not to break down.

It’s entirely possible that the place we will stay for the next two months will be a Home. I picked it based on an inner resonance I had with the photos. I’m hoping that when we settle in, after the nervousness wears off, we’ll bond with it. Of course, that will mean a little pang when we leave. But the pang of parting will be worth it, to have a Home waiting for us at the end of what may be very exhausting days.

If it turns out that we just have a place to stay, that will be okay, too. It will keep us focused on the goal–returning Home with my teen who will be hopeful for his own future, ready with skills to meet each day.

Tomorrow is the day! The journey is starting.

bookmark_borderToday I sat in the sun.

A woman is holding a flower, her eyes closed, as the sun shines on her face peacefully.  She feels good.
Depression and anxiety in your teen will take more than you have to give. When you have a moment’s peace, and you can afford to take it, I hope you count it as progress. Photo by VisionPic .net from Pexels

Today I took care of my own mental health, just for a bit. It felt good. Today I took care of the mom.

My youngest wanted me to play with her. I was too emotionally tired to do that. But I told her I would love to be outside with her and chat with her while she played.

We’ve had a lovely summer, warm enough for the tomatoes to do well and for swimming to feel good, but not too hot. We only needed air conditioning a few times. Yesterday it got quite chilly, suddenly. Today was very cool, also. It’s supposed to warm up again, summer isn’t over yet. But, for today, it felt so good to be warm in the sun.

I had other things I should have been doing. We are leaving in only a few days and there’s much to prepare.

But, today I sat in the sun.

The household was calm and quiet (it can be the exact opposite, most of the time). Just as I was thinking I had indulged for long enough, I heard some swear words from my son in need, directed at a sibling. His OCD had been triggered. It was time to go in, time to head back to “work.”

The quiet and peace may be rare in your home, like it is in my home. I encourage you to make a mental bookmark of those times. To see them as progress, to see them as hope, to help you see your child. And take some time to enjoy them.

There is a cost. If I’m honest, I get extremely frustrated by the advice to me, as the mom, to make sure to take care of myself. The cost is often too high. If I take some time to myself, everything is still waiting for me and has possibly multiplied. Kitchens don’t clean themselves. Children don’t brush their teeth, pick up their toys, and put themselves to bed without a parent making sure it happens. If you’ve been Parent A for many years, like I have, then you know the cost. Nobody will pick up your slack. It waits for you. If you also have a child with a mental health issue, the stress, worry, and work increase exponentially.

Once in while, there are enough things done and no current storms. When those moments come, enjoy some time in the sun.

If you’re a mental health mom, take care of her, too.

bookmark_borderWhat is OCD?

A black-and-white photo of a boy looking down, tears streaming down his face.  OCD is a painful anxiety disorder that causes major disruption and stress.
OCD is an anxiety disorder that causes major disruption and stress into a person’s life. Children, adolescents, and adults can develop OCD.
Photo by Kat Jayne from Pexels

Today I offer my understanding of OCD, Obsessive Compulsive Disorder. I am a lay person who does not have OCD. Hardly an expert. But I’d like to offer the other side to my previous post, What OCD is not . . .

Obsessions: persistent unwanted thoughts, images, or urges that intrude into a person’s thinking and cause excessive worry and anxiety.

Compulsions: hidden mental acts or overt behaviors performed repetitively to relieve or prevent the worry or anxiety generated by the obsession. Compulsions often have the intent of magically preventing some dreaded event or misfortune.

Some forms of OCD: checking, washing and cleaning, ordering and repeating, scrupulosity, hoarding, are common. Some compulsions can be completely internal. The person may have to visualize very specific things in a specific order to “neutralize” an obsessive thought or image. Some people may have rituals that they feel compelled to repeat to prevent a terrible disaster or even death.

To take an example that many people misunderstand– organization and symmetry. A person who loves organization and symmetry, like me, may keep their home and personal belongings well organized. They may set their table “just so.” They may have a specific way they load the dishwasher. They may line up their shoes in their closet in a special way.

If a person does these things because a neat and orderly home gives them pleasure and a messy and disorganized home makes them feel agitated, that is not OCD. It is difficult for me to go to bed with a messy kitchen because I hate waking up to a mess. No matter how tired I am, 99% of the time I clean my kitchen before I go to bed. But not because I am afraid I or someone else will die if I don’t.

A person with OCD may have an unwanted thought– “If my drawers are disorganized, my mother will die.” And then s/he will organize and re-organize their drawers, possibly for hours, until their brain tell them it’s enough, their mother is safe.

What does the organization of drawers have to do with their mother’s life? Nothing. And usually person with OCD knows this. Yet they cannot make the thought go away, nor can they resist the compulsion to act on it without very specific help.

Many people with OCD actually have quite messy homes because their compulsions take up so much time that they cannot complete what are known as the Activities of Daily Living (ADLs). They cannot move on from re-organizing their drawers, for example, to doing the dishes and brushing their teeth. Their day may be so full of hand washing and outfit changing, in an attempt to quiet down the thought that they will get sick from dirty hands and dirty clothes, that do not have time to shop for and prepare healthy food. They may not be able to exercise or spend time with friends. They may not get a good night’s sleep because they have to get up from bed thirty times to check that their doors are locked. And it all starts with unwanted, intrusive thoughts that something horrible will happen if they don’t. OCD tells them “you must do this to keep yourself and others safe,” but it is actually getting in the way of them having a safe, healthy life. And it often hurts the other people in their lives, too.

Some people with OCD become very skilled at hiding their symptoms. They are fully aware of how irrational their obsessions and compulsions are. They realize that everyone they know washes their hands a few times a day and doesn’t get sick and die. But they cannot stop the thoughts, they cannot stop themselves from washing their hands, over and over. They can see the cracks in their skin and see their hands bleed. They know that the cracks in their skin actually increase their risk of infection. And then they will continue to wash because the thoughts will not stop.

Someone who is trying to hide OCD may have excuses for no longer engaging in activities they used to enjoy. They may claim to be too tired, too busy, or trying to save money. They may openly exhibit symptoms of depression rather than symptoms of OCD. Depression can often be present, also, but the symptoms of depression can mask the symptoms of OCD, if the person is ashamed, as almost all sufferers of OCD are. Thus the mantra of everyone who loves someone with a mental illness, End the Stigma.

Most people with intrusive thoughts experience great shame associated with those thoughts. They are terrified to tell anyone the extent that these thoughts pervade their lives and the extreme nature of their thoughts. Some people have what is known pure obsessional OCD, sometimes known as Pure O. These are intrusive thoughts do not have an outward behavioral compulsion associated with them. Often the obsessions are socially and/or morally unacceptable. The person would never act on these thoughts and may come up with mental rituals to try and neutralize the thoughts. It take tremendous strength and courage to decide to get professional help. It takes even more courage for a person suffering from OCD to be completely honest with their therapist about their intrusive thoughts.

Of course OCD can range from mild to severe. Some people may have little OCD quirks. They seem inconsequential to the people around them. “Joe always checks his door three times before leaving.” What is happening in their mind is almost always more serious than the behavior appears, though. Just like any condition, getting help when OCD is mild is preferable to waiting until is has caused a major disruption in a person’s life. OCD rarely goes away on it’s own although it can wax and wane throughout a person’s lifetime. It tends to become more severe with major stress events (even positive ones, like getting married or getting a promotion) and hormonal changes.

Someone with OCD may “lack insight” and believe that their intrusive thoughts and compulsive behaviors are rational. This is a subset of OCD that I am less familiar with but it does exist.

I am so excited that my son will finally be getting help from a program specifically designed to meet his needs. They work with people like him every day. They’ve seen people set free! Once we are there, I will do my best to share our days as they happen. I want others to know help is available and I want to help alleviate any fears about what to expect. I’m not sure exactly what to expect, myself. I don’t know how intense the therapy will be. I don’t know how my son will react. But we will take it one day at a time.

Please comment below if you have any insight or personal experience to share that may help me or others understand OCD.

Talk with you soon.

bookmark_borderWhat OCD is not . . .

An ice cube tray with an even number of cubes removed, the remaining cubes in a pleasing, symmetrical pattern.  This is not a symptom of OCD by itself.
An affinity for symmetry and organization is not OCD. Feeling agitated by mess and disarray is not OCD. This was how I removed ice cubes this morning. I do not have OCD.

OCD is not being picky.

It is not liking symmetry and order.

OCD is not being very tidy and getting upset when people mess up your space.

It is not going into someone else’s messy space and wondering how they can live like that.

OCD is not having a routine that you follow every day.

It is not liking things to be done or organized in a particular way.

OCD is not getting irritated when a pizza isn’t cut symmetrically or someone is walking around with one shoe untied.

It is not having an urge to tie someone else’s untied shoe or to “even up” something that was arranged unevenly.

All of my kitchen spices are alphabetized. The shirts in my closet are organized by color, dark to light. I have made myself the exact same thing for breakfast every morning for the past 3 years. I hate clutter and knick-knacks. I like clean, modern design. I clean my kitchen every night; I do not go to bed until the dishes are done. I sweep and vacuum every day. I put things away when I am finished using them. I always buy the same brand and style of pen, in the same ink color. I am particular about my handwriting. I won’t buy a journal or planner unless the pages are white (not cream or off-white). I only like silver jewelry, not gold. I think and think and think before spending money on something that isn’t a necessity. Sometimes I weigh the pros and cons between the generic and the brand-name item in the grocery store, even if the price difference is only ten cents. When I take ice cubes out of the ice cube tray every morning (for my breakfast routine), I always take out an even number and I take them out so they leave a pattern that is pleasing to my eyes. If the last person left an uneven number of ice cubes in the tray, I take out an extra one, so the remaining cubes are in a pleasing, symmetrical pattern. I always use the Oxford comma and two spaces after a period–and I cannot stand it when others do not.

I do not have OCD.

Maybe you do some quirky things like I do. Maybe you think people like me are nuts. Either way, it’s not OCD. I’ve seen the memes. “You know you are OCD when . . . ” and a picture of a pizza cut HORRIBLY! Or one curtain that is an inch shorter than the other three. Before OCD was a reality in our family, I would have thought the memes were funny, too. I don’t think they’re funny anymore. Now, when I see those memes, it makes me think of someone wearing a scarf over their full head of hair and posting a selfie, “Look, I have cancer!”

Not funny.

You don’t make cancer jokes.

OCD jokes aren’t funny, either.

I’m not mad at people who post the memes or take “How OCD are you” quizzes. I understand, they’ve never experienced it. It seems like it might be a fun disorder. People might even think they have OCD because they will ALWAYS cut their pizza beautifully and replace those mis-matched curtains.

That’s not OCD.

OCD isn’t any fun and it isn’t funny.

How do you know if you’re not just quirky, if you actually have OCD?

If it’s preventing you from living your life.

The average person with OCD waits 17 years before getting real treatment. It’s not comedy, it’s a tragedy.

The next post will be descriptions of obsessions and compulsions, and how the two combine to make obsessive compulsive disorder.

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.