Thank You to the Global OCD Community!

I’m just going to get it out there, here and now. Parenting a child with OCD is exhausting. I, actually, still feel guilty to even write such a statement about my own child. We all knew, as we became parents that it would, at times, be an effort-filled endeavor for many years to come. I know I, personally, accepted this fact readily and even excitedly. Was I simply being naive or was it that I had no idea what was to come?

I ask myself, how I can possibly complain about how indescribably difficult it is, every day, 365 days, each year caring for and sharing a home with an OCD adolescent. I’d say to myself, isn’t she the one who’s really suffering? Isn’t she the one who must complete these seemingly endless rituals and contend with those ever-present, illogical thoughts? Isn’t she the one who must take the medications and cope with the side effects? Don’t I have it easy compared to her? So, how can I reasonably profess my exhaustion at days end without feeling a sense of guilt?

As the years of raising my daughter, Julia, alone have passed and her illness has contorted into it’s ever so many presentations, I’m only just beginning to understand that it’s not only alright to be exhausted its imperative to recognize how I’m feeling. I must admit, always, over these past ~9 years, I thought I was to forever be my little families rock, never allowing myself any attention. I reasoned, any strength I take to do for myself depletes the little I have left within to contend with Julia and her little sisters daily care. But by solely focusing on their needs, Julia’s doctors, schools and day-to-day living, the precious moments, days, weeks, months and years still continue to pass… indifferent to my plight.

I have recently “come-out” with my story through blogging and joining support groups for caregivers and sufferers, alike. I have learned so much from others on both sides of the OCD fence through these faceless interactions.

By actively involving myself in dialogs with OCD sufferers, I’ve managed to see a more well rounded view of this disease from both the young and old. They have been patient enough with me to carefully explain how life is perceived through their personally OCD clouded eyes. This insight and willingness to help me understand now allows me to better communicate with Julia and better be inside her head while she’s trapped within this ever-sticky spider web disease.

Having only spoken of such matters with medical specialist and a few close friends over these years, I have just realized I was severely lacking one crucial element. The element of compassion and understanding to only be derived through a community who knows these struggles first hand! Through my interactions with parents from around the world coping with raising an OCD child, I’ve gleaned yet another perspective all together. To my surprise, other parents so freely spoke of their confusion, frustration and exhaustion. Meanwhile, the others listened, asked questions and comforted them. They gave them, as well as myself, “permission” to be real to real feelings about their personal struggles. It’s been through these experiences that I now realize all I’ve been missing.

For all of you out here facing the day to day’s with your children, I implore you to reach out. Reach out to people who “get it.” You will gain a new rejuvenation. A new way of releasing yourselves from the ties that bind. A new way to comfort and console yourselves. We all have so much on our proverbial plates, let the strength of the many provide the support to those of us who really need it, whether we recognize it or not. You may be surprised to realize that you can, conversely, help others by way of your experiences, as well. It’s like a balancing of nature. It’s too much to bear alone. Remembering, OCD is a families disease. A disease where all involved need care and compassion. This is how we can each awaken to every new day and lay our heads down each night with the empowering knowledge that we are not alone.


Mothers Letter To Suffering Daughter

My Dearest Julia,

We are going to do things differently. We are going to communicate. I am not going to allow you to give up on yourself. You are a courageous, smart, loving, wonderful person who has a big problem but a problem, believe it or not, which has solutions. You must be willing to, at least, try. I know you don’t feel courageous but courage is not the lack of fear but how you react and cope with the fear.

I know how impossibly difficult it is to discuss your OCD so I want to correspond with you via email until we are able to have a personal, face to face, dialogue. I am only trying to help you the best I know how. I have extensively researched, spoken to experts and corresponded with countess others suffering from OCD. From all this information, I’ve learned a lot and have come to some conclusions.

I realize you feel helpless against your OCD, the intrusive thoughts and need to act upon them. This I now, more fully understand. You must try to understand, too, that I don’t see things through the eyes of OCD so I upset you unintentionally.

I’d like to begin with what I have learned about the brain and OCD. It is not your fault you have OCD. You, and all OCD sufferers, brain chemistry and structures are different than people without OCD. Put in simple terms, 2 parts of the brain are bound together where there should be space in between. Your brain sends a signal and it gets stuck or locked and can’t be further processed. Then that thought gets amplified over and over in a non logical way. It gets stuck or locked. The way to make it better is to re-wire the connections in your brain. I can show you pictures of brain scans proving this fact.

Just so your clear, obsessions are thoughts and compulsions are the actions you take relating to the thought.

Remember when your sister, Carmela, could not speak because the speech part of her brain was damaged? The only way for her to be able to speak was to re-wire the connections around that part of her brain. The same is similar for you. You have to re-wire those connections so that the thoughts and actions will no longer be “locked.” I have learned there is more than one way accomplish this task. As you know, the most popular and most used is exposure therapy. But, there are also other ways which offer really good results.

One person describes OCD this way, “I compare OCD to a spider spinning a web at warp speed. The center of the web is the triggering event. Every intersection of the web is another possibility OCD creates in my mind, and it can grow infinitely. Feeding the spider by acting out the compulsions only makes her spin faster, until the web is so large, the spinning so out of control, the situation so infinite and sticky that all I can do is collapse in a sobbing heap of submission.  How do you stop when you get to that point? How do you know what’s real and what isn’t?  I want to stop being afraid. But I’ve always been afraid, though the crippling nature of contamination fear is new to me. This is not the first time OCD has prevented me from enjoying life, but it is the most severe. It is hell. I just want my life back more than anything in the world.”

She also says, “I f’—ing hate this disorder. It takes everything… I deeply resent the fact that I have to struggle painfully with shit that is completely normal for everyone else.”

That is all for now. I am going to email you often and I expect some response each time. I adore you and want only what is best for you. Sometimes, I may say things you don’t want to hear as you may to me. The point is to communicate. Since your not in any kind of therapy program, we must create our own. This is non negotiable. It will be difficult at times, and I will be here for you every step of the way.

I will listen and respect you at all times. There will be things I am going to require, things for which you may not agree but they will be required, none the less. If we work as a team it will be much better than if we don’t. You must remember, though, I am the mother and you are the daughter. I need you to trust me. And, things in our lives will improve.

Your loving mother,

Momma


Where Do You Go When There’s No Where To Go?

As a parent of a child with severe OCD, I can attest to the difficulties life presents. It’s a never ending cycle just trying to keep any semblance of normalcy within the family. Now, compound this dilemma with a child who’s many past therapist have essentially given up on any chance for her recovery leaves a parent feeling hopeless and desperate. The endless quest for someone to help her recover,even in the smallest of ways, has become a heart breaking endeavor. I’ve contacted the foremost experts in the field, all over the country, and received several referrals to local therapists and treatment programs. One after the next states, “we don’t accept insurance.” I contacted, again, the leading expert at Duke and he stated, “Am sorry to have to be the bearer of hard news—I wouldn’t organize services for kids that way if it was up to me—but just about everyone in the specialty clinical framework is out of network and no one accepts Medicaid.” How can it be true that the most ill children who are suffering so terrible are not accepted for treatment unless you can pay for it out-of-pocket? Everything you read says how critical early intervention is for children with OCD yet they are systematically eliminated from quality care even though they are covered under major insurance policies.


Please Help Me Understand OCD

Please help me understand OCD. I have a 12.5 yr. old daughter who spends every waking moment obsessing and compulsing. She is convinced her school is       contaminated. This is her whole life. For example, she takes showers that last hours and hours. Over & over; she scrubs herself raw, until her fingers bleed where there used to be nails and nail beds. She scrubs her eyes and up her nasal passages with soap to the point her vision is blurry all the time and her sinuses burn continuously. She violently brushes her teeth to the point of permanent enamel loss. She scrubs her tonsils and uvula until she gags or vomits. She scrubs her scalp and hair to the point it’s breaking at the roots and falling out. She eats toothpaste, which is toxic, to kill the germs in her stomach from eating at school. She dreads school because of all the horrible decontamination rituals afterwords.

She gets angry if I bring up the topic of OCD and cries that I don’t understand. She won’t take her medicine. She hates therapists. Most of all she is convinced there is nothing or no one to help her get better. She knows she’s doomed to a life of misery and expresses that the way she has to live is just too much to bare. She is angry that others can just be normal.

Please offer me some insight, advice, personal stories, suggestions or anything at all to assist me with her plight.

Thank you in advance,


Our Story, A Brief History

We began this journey when Julia wasn’t even four. She is now 12 ½. Over the past years, believe it or not, it has been so, so much worse than it is currently. I believe that her PANDAS was the initial instigator. The symptoms of PANDAS are too numerous to express at this time. The PANDAS episodes, caused by her a-typical strep infections, began to wind down by about age 9, ~5 years later! Therefor, for the first several years, her symptoms included 6-8 PANDA episodes annually which appeared to simply run back to back, severe OCD, as well as, constant, gruesome bizarre and non bizarre auditory and visual hallucinations.

These hallucinations plagued her endlessly. None the less, I insisted she attended school beginning at age 5. We coped with these “invisible intruders,” somehow, and then they mysteriously disappeared after~ 4 years.

When she turned 6, she began making strange noises accompanied by jerking movements and tightening of her muscles to the point of often dislocating her joints. After many neurological tests, it was confirmed by her neurologist she had Tourettes Syndrome. Now, on top of the endless rituals, PANDA attacks and the invisible invaders, there was yet another illness identified. The Tourettes took a lot out of her physically and the PANDAS and OCD took a lot out of her both physically and psychologically. Although she still has symptoms, at times of great stress, she has learned to control the Tourettes and it is no longer an issue, either.

The germaphobia began to rear it’s wicked head when she was about 8 years old. Initially, she began by believing certain people we knew well were contaminated. The germaphobia still exists to this day yet in ever-changing forms. Her primary mortal fear is contamination from her junior high school.

Beginning at ~age 8, as well, she started refusing to throw anything away. When I say anything, I mean everything! Everything had deep personal meaning. This was to become an overwhelming case of hording! This inexplicable condition is bewildering at the very least. Her bedroom became an edition straight out of the television show! The hording lasted a couple of years and then one day, she just cleaned it all up and it’s never been an issue again.

During these years, she missed quite a lot of school. On top of all we were going through, however, she managed to maintain an A,B average. I’ continued seeking more effective treatment for her as she was on medications and in therapy but the two proved useless.

Enabling: She’s now in the 7th grade. When in the 4th grade, I steadily ceased all enabling tactics. She went from A’s and B’s to straight F’s. Because her year end test scores were so high, she managed to pass the grade. That same year she had to be admitted into a pediatric psychiatric ward for 2 weeks. Soon after which, I began allowing for some enabling. Even with her ever-present symptoms her grades began to climb. In one term, she had straight A’s and almost no absences!

During early 5th grade, I again began to remove any enabling, slowly, and she became close to catatonic short of the OCD and germaphobia. Her Tourettes exacerbated and she stayed in her “sterile” bedroom and cried…all the time. I never got to see her. She had no social life and remained completely alone. It was utterly heartbreaking. She continued with her failing grades. Again, after several months of “solitary confinement”, I again allowed some enabling. Enough that she felt as though she could leave her room. Her grades immediately improved, she was more involved as a family member and she began speaking to friends on the phone.

When she was 9, again I began to cease any enabling. She, yet again, found solace in her bedroom where all was “sterile.” She went back to the aforementioned state until I began to allow certain enabling tactics. The tactics included things such as, now allowing her to spray highly diluted Lysol on the carpet, door handles and other objects identified as “contaminated.” I would wash my hands if asked. I would answer her, every time, I’d used the bathroom confirming to her that I’d washed my hands.

Although still exceptionally debilitated and run by her OCD, with some enabling, she has managed to miss less than 2 days of school each year, has a friend, makes straight A’s and can move about the house freely, as long as she has her Lysol and every ones shoes are off.

In conclusion, as the many years have passed some constants remain: 1) Many of her varying illnesses and symptoms have each, in time, dissipated. 2) When all “enabling” is removed, the consequences have proven severe. She has hit rock bottom many times and never once ceased to have RA. 3) When some level of enabling is afforded, her grades skyrocket, she socializes and can be a part of the family.

I am afraid. I am afraid to enable and afraid to not. She is the most remarkable, kind, smart person one has ever known. It’s just that she’s really ill. She’s really ill but able to “function” with some enabling. She expresses, “she is miserable from her OCD,” her “OCD is incurable because it has total control and there is no hope.”and that “I just don’t get it.” She lovingly thanks me for helping her “hold it together.”

I just don’t know where to draw the line.


What Constitutes Harmful Enabling?

The pivotal question still remains, how is the line drawn between enabling meant to keep my 12 year old daughter, Julia, out of a spiraling hysteria where what little is stable all collapses and enabling which is causing more harm than good? Many experts agree, enabling reinforces the sufferers symptoms. However, they don’t detail exactly what constitutes enabling, specifically. Are there not many levels of enabling?

  • Is great harm caused if Julia needs me to wash my hands because they’ve become “contaminated” as I accidentally brushed by the shirt sleeve she wore to school? Knowing if I don’t, she will watch every move I make from then on and all in which I touch, by default, becomes contaminated and, thus, requires ritualistic sterilization?
  • Is great harm caused if she must Lysol our car because she rode in it after school 8 weeks ago, has not been in it since, and “knows” it is still contaminated? Should this be allowed? She won’t get into the car until decontamination is complete. Should I physically force her into the car? Thereby, disallowing enabling?
  • Is great harm caused if I don’t physically remove her from the horrible “decontamination shower” rituals after every school day? They go on for hours, but she can’t seem to do it differently. I have to make it stop but don’t know how. I feel I’ve tried everything! What level, if any, of enabling is this?
  • Is great harm caused if we use the supermarket checkout isles 3, 7, or 8 if she is currently contaminated from that day at school and those are the “contaminated” isles or use checkout 2, 4 or 6 if she is “clean.” Because, if we use 3, 7 or 8 when she is “clean” then she will no longer be “clean” because she has used them at some point in the past while “contaminated” and thus be subject to compulsively reengage in her endless shower routine to rid herself of the invisible contamination?

Due to her RA, speaking to her about any of these issues catapults her into a crying frenzy. She repeatedly states, “Mommy you just don’t get it, you just don’t understand!” “You just make it all worse when you talk to me about my OCD,” Some experts profess, if you can’t get the sufferer to stop then you must try to disengage from the sufferers activities and allow the sufferer to continue their rituals on their own. Thereby, by disengaging you have a chance to maintain your own sanity.

But, as said in the prior Enabling post, without any form of enabling Julia looses her ability to cope all together and her grades plummet, the symptoms multiply to levels which are even more impossible to express, and the world in which we inhabit seemingly ceases to exist. We become victims of the victims. Therefore, the initial, pivotal question still remains. Where does one draw the line?


Enabling, The Invisible Fence, Germaphobia

Caring for a child who has a severe mental illness is exceptionally difficult. Conducting daily life with a child suffering from OCD, who appears perfectly normal to the outside world but is plagued by behaviors which are illogical and debilitating, seen only by those closest, is nothing short of a seemingly hopeless task. The reality is, along with the child afflicted with OCD, it is the entire family, or the single parent, who gets mired up into the child’s irrational world. When it comes to different levels of enabling; where do you draw the line between maintaining any semblance of peace verses total chaos? What degree of enabling is acceptable?

My daughter of 12 has severe OCD with exceptionally debilitating germaphobia. Among other issues, as with many childhood OCD sufferers, she is morbidly germaphobic of her school. The rituals to rid herself of the germs supposedly obtained at school are simply horrid. She believes she and all related must be decontaminated after school every day. These rituals are seemingly endless, take hours to complete and cause her physical and emotional pain. However, any deviation from these rituals catapults her into a ostensibly eternal, stress induced frenzy. Having dealt with the myriad of her OCD symptoms since before the age of 4, I’ve learned the hard way that there are no simple answers to the “enabling” question. To add insult to injury she also has recovery avoidance which literally leaves me alone to fend for our lives. I am continuously seeking solutions for her recovery. The bottom line, however, is that I’m on my own, everyday, to make the “fence” decisions in an effort to grapple with her monstrous malady.

When is any level of enabling acceptable? Dealing with OCD is hard enough but doing so within the multifaceted phases involved with childhood and puberty can be an exceptionally discouraging endeavor. Childhood OCD is certainly unique in many ways from adult OCD. The invisible fence the adult must teeter, between whether to enable or not, is infinitesimally thin. However, my experience has proven, one side of this phantom fence allows for some modicum of enabling and the other side allows for none. I must say that I enable her the very least I feel possible at the particular time. However, my experience has proven if all enabling ceases, her grades plummet from A’s to F’s and inpatient psychiatric wards may well, again, be part of her immediate future. Conversely, while the other side of this illusive fence professes to not allow any accommodation to the OCD as it shall certainly propel the disease yet further into the deep chasm of the OCD inferno. The conundrum is simply that the middle of the fence seems to get more & more miniscule, and at times, appears non-existent.

Therefore, one must ask, is there a middle ground to enabling or is it simply an invisible fence I must teeter upon minute by minute?


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