Laurie McDonagh, RN
Vice President, OCF Jacksonville, USA
Reprinted with permission from the OCF Newsletter, Late Fall, 2007
A few weeks ago the OCD Newsletter arrived, and as usual I enjoyed reading the many wonderful articles. As a mother of a twenty-year old son with severe OCD, I am always heartened by articles from parents of children whose OCD has gone into remission. It helps my personal perspective to read about the success of others that my own family has not experienced.
I would not be honest if I did not write of the sadness and sense of loss that resonate within me for my family and those like us who have not seen our children improve but whose experiences, are, never the less, just as valid.
My son says OCD has always been with him as far back as he can remember, even when he: could not express the fears to us. Initially, OCD made its appearance masquerading as separation anxiety, later as school phobias and panic attacks. Finally, when he was ten years old, it manifested itself in the classic hand washing presentation. He was besieged by fears of germs and contamination and was .washing his hands until they bled, using barriers to touch things, and avoiding the children at school. Although he had been seeing a child psychiatrist for anxiety, OCD had not been a .working diagnosis. I remembered seeing these behaviours during my psychiatric training in
Nursing school and insisted that he be evaluated for OCD.
Thus, began our long day's journey into night, through many medications, doctors, therapy and depression. There was a duality that encompassed our lives. To the world we appeared as a normal family with three active boys, but within the walls of our home we struggled with our own private hell, unable to make sense of the rapidly unfolding dysfunctionality.
I found the OC Foundation and ordered every book and tape that pertained to kids. I was convinced that if I learned enough, worked hard, and found the right medications, and the best doctors, together we would overcome this thing that had stolen life as we knew it. I quit my part-time nursing job to focus more time on my son's evolving school problems. I became his advocate at school since no one there had ever heard of OCD. During this time I became active in our fledgling local OCF Affiliate. In 2001, with the help of another mother, I began the MOCCA (Mothers of Obsessive Compulsive Children and Adolescents) support group for parents.
During this time, however, my son was not improving. His OCD waxed and waned regardless of the measures taken. His obsessions dominated most of his thoughts. He had difficulty completing school assignments, taking written tests, and reading novels. We hired a tutor for math, and soon she was tutoring him in most subjects. His obsessions dominated most of his thoughts. Luckily, he was attending a small private school for middle and high schoolers, and they were incredibly understanding.
My son's OCD became very severe during his junior year. My husband and I had frequent discussions about hospitalising him. We were living a nightmare. His high anxiety levels gave way to terrible frustration and then to angry outbursts. We were eventually able to convince him to enter our patient intensive therapy. We rented an apartment, and our son and I temporarily moved to another state.
We had high hopes for therapeutic success, but once again he made minimal progress. Each evening he would come home and carry out hours of washing compulsions that he had worked so hard to control during the day. It became apparent that at this pace, improvement would take a great deal more therapy. Unfortunately, more time away from school was endangering his graduation, and he wanted very much to graduate with his friend. We returned home; and after graduation, I contacted two residential OCD treatment centres and he was placed on their waiting lists. During this time our family life was unbearable. We were averaging three to four hours of sleep at night, and my husband and I were both working full time. Most of the night time hours, I was trying to convince our son to go to bed. He was at the bedside or stalking me throughout the house, seeking reassurance. My unwillingness to help him complete rituals or reassure him would throw him into angry rages.
Finally, after three months my son was admitted to one of the treatment centers. His dad and I were terrified this too would be unsuccessful. One month after entering treatment he was recommended for discharge. Although I still cannot completely understand why, he was either unable or unwilling to push beyond a certain point in his behaviour therapy. Since he was still on the waiting list for another facility, we sent him there a few weeks later. Once again, one month after admission, he was recommended for discharge for the same reason.
My son has been home for a few months. He was has been able to put some small limits on his rituals after residential treatment; and most important, the intermittent rages seem to have abated. But he is far from healthy, and his life is narrowly constricted by his OCD. He is working towards independent living, getting a driver's license and a part-time job with computers. Change for him is very difficult, and he would rather stay at home. He has moments of great courage when he challenges himself, but it is heartbreaking to witness that he can never relax and enjoy life.
The ravages of severe OCD in children are profound. Like a thief in the night, it steals childhood and leaves in its wake stunted emotional maturity, as it tears at the very fabric of the family. OCD is a demanding taskmaster that will be satisfied with nothing less than all the time and energy parents have to give. Often even that is not enough, and families are broken under the strain.
The painful truth is that sometimes, despite excellent professional care and dedicated parenting, your child just does not get well. Sometimes this is as good as it gets, for now. It is a hard reality, but just as you did not cause the OCD, you cannot control it. And no matter how hard you try, you cannot cure it. Personally, this has been knowledge painfully gained. I have spent ten years fighting this reality. At some point my son must claim ownership of his disorder. Ultimately, he is alone with his illness; and only he can confront it. As much as I would like to take that burden from him, I cannot.
I don't know what the future holds for my son, but I now understand my job is to move him toward independence and then to step aside and let him take up his own battle with OCD. He has been given the tools with which to fight, and now he must find the will to do so.
In closing, I would like to emphasize the necessity of finding support for you, whether it be in the form of a support group or a trusted friend. They will help you take each day at a time and boost your spirits when life feels hopeless. Support systems provide a much needed perspective to focus on the incremental gains your child makes and the effort expended to make those gains. When you are living in the eye of this storm, every day can be a struggle. Parents, be kind to yourselves; stay strong; and never, never lose hope!