Question on adjusting

My son was in an accident about year ago and has been home with us for about nine months (he's 30). Although he has made a lot of progress he seems to be at a plateau. Also, his wife is divorcing him and the kids don't really understand "what's wrong with dad." He is angry a great deal and we were told that since the most healing occurs during the first year, he needs to adjust to his deficits. What more can or should we expect? What can we do with all his anger? And how can we help him with this adjustment?

First, if he is only one year post injury, he is still very early in his recovery, and a great deal of progress is possible in his future. I know a lot of families and persons with brain injury are told that most of the progress a person with brain injury will experience is in the first year. Some doctors say "first three years" and some say "first five years," but this is only part of the story!

Natural healing and functional recovery
It appears to me that much of what many doctors and therapists mean by "progress" is linked to what we commonly think of as "healing," much the way a bone might heal. Or it's related to having time to "adjust" to a problem, much the way one might adjust to, or cope with, an injured back that surgery or therapy can't fix.

Now, learning skills related to functional recovery is a different matter altogether! We need to be mindful of the difference and focus more on the latter. Some people "heal" a great deal (meaning their organic brain regains a great deal of it's former function), but their lives are a mess! I know others whose healing process leaves them with severe impairments, but they have regained so much "function" it seems miraculous to those around them! They are back to work or in school, or living on their own again, and have full, happy, meaningful lives -- the whole bit.

Their recovery is often considered "miraculous" or even an exception to the rule! It may be a miracle all right, but it's not a mystery! These individuals have either learned on their own, or have been taught by others, many of the basic skills and principles of compensation that enable them to beat the odds and outsmart the injury!

It's similar to the way persons with severe hearing or visual impairments can learn skills and use tools to do "end runs" around their impairments. Amplification devices, learning to read lips, using TTY machines, using talking computers, special monitors and/or Braille printers -- these are all common tools and strategies persons with these disabilities use to overcome their challenges.

It's important to understand how all the components of the recovery process fit together -- and the distinction between so-called "healing" and functional recovery needs to be made. It's often not made entirely clear at first, and people like you and your son may think you're at the end of the line, when you may only be at the beginning!

Adjustment
Just as the natural healing process is part of the recovery and rehabilitation process, so-called "adjustment counseling" plays a role too, but it should not be given a role that is inappropriate to the situation. Personally, I feel that some aspects of so-called "adjustment counseling" are overrated. In some cases, it's introduced too early in the process, or in the absence of teaching the person necessary skills.

Now, I get into arguments about this all the time, so it won't surprise me if we get a lot of e-mail on this one! Don't get me wrong, it's not that "adjustment" (or "coping") doesn't have a role. It's just that focusing on it too soon or too intensely may mean a person misses out on focusing on things that will help them regain function, instead of simply adjusting to what has been lost.

A friend of mine who uses a wheelchair explained it to me this way: Imagine a situation where a person loses their legs and was not given a wheelchair. It would be considered ridiculous to send them to a counselor to learn how to "adjust" to their limitations (stay at home, in bed perhaps). On the other hand, if they balked at using their tool, and decided instead, to sit at home and wait for their legs to grow back, it's probably safe to say that "adjustment counseling" would be appropriate. However, the nature of the counseling would likely be geared toward helping the person adjust to building a new life, using their new tool -- not toward adjusting to all the things they can no longer do without the use of their legs!

Same thing for persons with brain injury! Adjusting to life with brain injury, after the person has been given tools and skills is one thing. Expecting them to adjust to their limitations in the absence of providing tools or skills is another altogether! Because we have not yet developed as many tools for persons with brain injury as we have for persons with other disabilities, it may seem that the only reasonable course is to suggest that persons with brain injury start and stop with "adjustment." I think this is a mistake!

Cognitive rehabilitation
I'm curious if your son has had much in the way of "cognitive rehabilitation"? Cognitive rehab (some call it "cognitive retraining") helps a person learn new cognitive and compensatory skills. There are many strategies a person can learn to deal with the intense frustration of living with a brain injury, and this frustration is often a source of anger -- even rage -- following a brain injury. Some approaches lean toward the behavioral, and some are designed to address to root cause of frustration -- difficulties with the ordinary tasks of living. Both approaches can be effective, especially in combination.

Medical Care
If your son is not under the care of a physiatrist (pronounced FIZ-I-A-TRIST) who has experience with long-term brain injury recovery, it might be wise to seek one out (a physiatrist is an MD who specializes in rehabilitation medicine). You may also benefit from the advice and counsel of a good neuropsychologist (either someone with a Ph.D. or a Psy.D. degree). And if medication for anger management may be indicated, a neuropsychiatrist (an MD who specializes in both brain injury and psychiatry) may be useful, as well. Has your son been checked for a seizure disorder? Brain injury can cause so-called absent seizures, which may cause what look like typical behavior disorders in some individuals. These kinds of seizures may not be easy for the family to detect. If your son's treating physician thinks he may be having seizures, he or she should be able to refer him to a neurologist who is up on the latest treatments and medications for possible seizure disorders.

Counseling
A clinical psychologist who is familiar with some of the typical emotional control issues many persons with brain injury face, would likely be a resource to all of you. May I assume that a complete neuropsychological assessment has been done? If not, this might be in order, so you can get some recommendations for next steps. Neuropsychologists generally give these assessments (measurements of memory, attention, executive function, and the like). Now, some neuropsychologists do actual therapy (counseling) as part of their practice. Others are primarily "testers" and will likely give you a referral to a "talk therapist" who has experience helping persons with brain injury cope and compensate.

In my experience, the best counselors are those who understand the important role of compensation in the lives of persons with brain injury, whether they are neuropsychologists or not. A good counselor can be a psychologist, a neuropsychologist, a family counselor, social worker or even a trained peer counselor -- as long as they are familiar with the issues of brain injury, long-term recovery, and the role and value of compensatory skills in the person's life. The very best counselors are either able to offer real-life, practical strategies and tactics toward this end, or they can help you find people who can!

Stress
It sounds like you and your son are both under a lot of stress -- no doubt his wife and children too. Given all the changes his life is taking, and all the stress this must be producing, it isn't surprising to me that he appears to have plateaud.

After a brain injury, common wisdom tells us that stress is best kept to a minimum, so I'm going to guess that all the stressors in his life are probably interfering with the kind of progress he could be making -- or will make -- when things settle down a bit. Clearly, some stressors are unavoidable. The ones you can help him with probably revolve around ensuring that he learn and follow through with strategies that relieve the stress caused by living day-to-day with the effects of brain injury.

Living with memory impairment and the myriad of other issues that stem from brain injury is inherently stressful -- not being able to remember things, not being able to find things, spacing appointments, getting lost or disoriented, forgetting what you want to talk to people about, dealing with visual and auditory overload, feeling perpetually disorganized, having difficulty initiating things, having difficulty following through with things you have started, feeling distracted, feeling tired and overloaded -- 24 hours a day, 7 days a week -- no let up -- no relief!! Ordinary day-to-day life is just plain stressful! Add to this the kid's reactions, the divorce, loss of work and friends, fear about his future -- and well, it all adds up to MAJOR STRESS!

So, if we assume that stress should be reduced, my suggestion would be to focus on those stress factors over which you and your son have some control. Again, this brings us back to compensatory strategies! If a person with brain injury can learn some basic skills to manage one or two issues, say remembering things (better term, "retrieving needed information") or following through with things, slowly the stress caused by disruptions in day-to-day life can abate.

Of course, other things can help relieve stress too -- biofeedback and neurofeedback work for many people. So does listening to relaxing music. So does meditation and exercise. Medication helps some, though it tends not to relieve the causes of day-to-day stress, just the symptoms.

Where to find help
Many people find good resources by networking with other family members. Whether you are looking for a competent doctor, an experienced cognitive therapist, a knowledgeable compensatory skills trainer, an effective counselor, community resources, or even a good relaxation tape, families and other persons with brain injury who have "walked the walk" will often have excellent resources for you.

Where do you find these individuals? You may find some of them at your local support group. Or you can contact your state's Brain Injury Association (the national association, Brain Injury Association, Inc., in Alexandria, Virginia, has a website, which lists all the state associations. The URL is http://www.biausa.org).

Internet Resources
There are other excellent resources on the Internet too! I facilitate an e-mail support and discussion list for family members called ASSIST-TBI. Family members from all over the world participate. And it is only one of many such e-mail support and discussion groups. There is also CARE-TBI and TBI-SPRT. There are even groups for young people.

Local support groups and e-mail support and discussion lists are likely to be an important source of peer support for your son too! TBI-LIVING and TBI-WORKING are two such groups (I facilitate the latter). TBI-SPRT, mentioned above, is open to persons with brain injury too, not just family members.

All these resources will give both you and your son strength and hope, not to mention companionship and good ideas for how to cope and compensate. For your son, hearing suggestions from others who have "been there" and have battled back, is often easier than hearing advice from doctors, therapists or even family members. Again, a mix of resources may be in order.

Life Planning
If your son is 30 years old, and in your care now, if he is capable of learning how to live independently and/or work again, this would seem like a reasonable goal to pursue. You didn't say if he was living with you merely for financial reasons, or if he was living with you because he cannot care for himself independently.

If he cannot care for himself, and is not expected to be able to, hopefully one or more of the professionals you work with can direct you to other professionals who help families create something called a "life care plan." Again, support groups, your state Brain Injury Association and the family support lists on the Internet are often good ways to find these kinds of resources.

Expectations
As for expectations, all I can tell you is that I have worked with people who are 10, 20 and even 30 years post-injury, and it is indeed possible to make substantial gains even after that many years following an injury! I've seen people with severe injury return to independent life -- even graduate school. And I've seen people with so-called "mild" brain injury (better term is "permanent brain injury without coma"), who can't seem to put any of the pieces back together. The range is wide, and the outcome may or may not be as related to the severity of the injury as we are often led to believe.

I know I must be sounding like a broken record by now, but most of the success stories I have witnessed have been a result of learning to compensate! Perhaps this is because compensation empowers a person to keep growing and stretching. Perhaps it is because compensation fills the gaps many so-called "deficits" from brain injury create. Despite the fact that I'm not entirely sure why compensation works as well as it does, it is clearly an important factor when it comes to expectations.

Mastery of compensatory strategies helps a person expand their limits -- doesn't force a person to "adjust" to limitations they find distasteful in the first place. It counters frustration. It dissipates feelings of helplessness and hopelessness. Feeling and being empowered makes it possible to keep slogging forward with what is often a painfully slowwwwwwww... incremental...often two-steps-forward-one-step-back kind of journey that can, and does, take YEARS!

Putting it all together
There are no pat answers, of course, and I don't mean to make it sound like there is a quick fix. There isn't! The suggestions I'm making here are based upon what I've observed while working with families and persons with brain injury over the long term from the "client side," as it were. I have paid close attention to observable patterns for what works for persons with this injury after five, ten or more years, not just in the first few years.

Karen, know that you have your hands full and that you and your son and his family will benefit from a team of supports -- ranging from doctors and therapists to peer supports and even Internet resources. If you can't afford the professionals, learn how other families in the same situation have coped. I know families who have read books on cognitive rehabilitation, hired former teachers, gone to state association workshops, talked to others, and literally put home-based compensatory skills programs together single-handedly for their loved ones. There are ways to deal, when you are armed with information and resources.

I can't overemphasize the importance of networking with other parents. They can help you get through this difficult time, and they will also give you insight into ways you can help maximize your son's, his family's and your quality of life. After all, you all "suffered" this injury, not just your son, and you all need support getting through these times! Hope this helps!

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