Ask Kathy M. Archives
A Collection of Questions and Answers from TBI Advice Expert - Kathy Moeller

Topic: Therapy - Rehabilitation Options of a Family with a 3-year old with Brain Injury

Question:

Dear Kathy M.,

Almost one year ago, my three-year-old was hit by an airbag in the front seat. Unfortunately, she had a habit of climbing into the front seat before the car was completely stopped, and when the airbag discharged, it slammed her into the windshield and she sustained a severe head injury.

We have been told she had a "tear in the dura and some sheering," but to this day I only know what I have read at the hospital. What I heard them to say was that because she is so young, the dura can be repaired and the sheering can reroute itself and "learn out" of other parts of the brain. She was in a coma for about 3 weeks. She had brain surgery and got the best of care. She smiled at me for the first time on Mothers day 1999 and we brought her home at the end of June.

At the time she had a wheel chair but she refused to stay in it. So we put her helmet on her and let her scoot around the house (that is what she wanted to do)..She is now up and walking and trying to run. She is also talking, and basicaly tests out at a 3 year, 3 month level when evaluated. Butttt..... it's clear she has a long way to go.

She had out patient therapy for a while, and then we had someone come to our house to help, but now the insurance is done paying and she needs to continue to have these services. What are our options? We have six children and do not qualify for any aid at all through our state. I am scared she will not get the help she needs due to lack of money! HELP!

Niki


Kathy's Response:

Dear Niki,

You have asked a lot of questions, some of which I am not qualified to answer. As a person with brain injury, who networks internationally with hundreds of families, I will do the best I can to give you resources and options I know about through my work with them.

Let me start by saying there is hope for your daughter and for you, as her family. Even if you cannot find the formal assistance you seek (formal therapy and the money to pay for it), there are many things you can do to help your daughter. You may need to set up a family-based rehabilitation program for her. But before you panic, you need to know that lots of families have done this, and they are "out there" ready and willing to help you!

Let's take one issue at a time.

Natural Healing Process

You wrote, "We have been told she had a tear in the dura and some sheering" and also, "What I (you) heard them to say was that because she is so young, the dura can be repaired and the sheering can reroute itself and 'learn out' of other parts of the brain."

Since I have no medical training, I cannot address this from a medical standpoint. What I can tell you is that there is a great deal of discussion in the professional literature about how the brain heals, what parts can and cannot "heal," and how the brain itself compensates for parts of the brain that are injured. However, when I use the word "discussion," I should also include that these discussions also include "debates."

Based on what I have read, when it comes to how the brain heals, how long the healing process lasts, and what the functional outcome is likely to be (based on "healing" alone), the jury is still out, so to speak. I am not confident that the medical community (even the leaders in brain recovery research) are themselves confident about how all this works! There are theories (hypotheses in some cases), but I do not think scientific research has "proven" some of the things we are told by our doctors about how the brain heals, particularly with respect to the "re-routing" issue and what this means in terms of functional outcome in a person's day-to-day life.

If you are interested in how the brain heals, my suggestion would be to start researching this for yourself (if you have the time). How? By talking to more doctors than the ones you have already spoken with, reading the professional literature, researching discussion lists and web sites on the internet, and/or networking with other families who may have already done this research.

Compensation Model

Besides learning more about how the brain itself heals, you would be wise to start learning about compensation strategies persons with brain injury use.

In the brain injury community (not necessarily the medical community), "compensation" is a very hot topic. That's because many people who have lived with brain injury for some time (anywhere from 5 to 30+ years), feel that the key to functional recovery has been learning how to compensate for the cognitive functions that do not come "naturally" any longer (meaning, they all their former cognitive functions did not fully return after the healing process was complete.

Persons with brain injury can learn to compensate for lost function in much the same way anyone with a disability who has lost some sort of "function," learns to compensate (for example, persons with blindness, deafness or persons who have lost the use of their limbs).

In my view, the medical community pays so much attention (some of it undue) to the so-called "healing process" that the miss opportunities to help families learn about compensation. Research dollars are spent on studying how the brain heals. Articles are written about what heals and what does not, how long healing lasts, etc. Discussions with families often focus on "how long" it will take for certain functions to return and importantly, predictions are made about what functions are likely and not likely to return -- based on "natural healing." Unfortunately, many of us in the brain injury community feel that this focus misses the boat. To us, the goal is functional recovery, whether the brain itself "heals" or not. And the key to regaining many of the lost cognitive functions is often learning compensation skills and startegies, not "waiting around for the brain to heal."

I am curious, did your doctors talk to you -- at all -- about how to teach your daughter to compensate for some of the cognitive functions she may have lost permanently?

Using the helmet you talked about in your inquiry is an example of compensating (so the child could crawl around safely). I know adults with brain injury whose balance is still affected and they were bicycle helmets whenever they walk around their home or in the community (some of the motorcycle helmets are particularly good -- and even smaller than some of the bicycle helmets). As your daughter grows, you will want to coach her (and the school personnel), to learn brain-injury specific strategies for reading, sequencing, "chunking" and other things that her brain may not do "naturally" for her any longer.

"Functional Recovery"

There is a difference between the kind of recovery that takes place naturally (or with the help of surgical or drug interventions) and the kind of recovery that takes place as a result of compensation. The difference is that the former is based on basically scoring the same on tests and the latter is based on doing things in day-to-day life. For example, in my situation, I test out in the 5th to 25th percentile in many neuropsycholgical (and work readiness) assessments. On the other hand, I function well in day-to-day life. My brain has not fully "healed" but I have achieved "functional recovery." If I did not use strategies to compensate (and relied only on my impaired brain), I doubt I would be able to work, get around town or even care for myself independently!

Choices

As adults with brain injury, we have choices. You are in a position to make some choices for your daughter. Those who lean toward or opt for the "wait for the brain to heal/re-route itself, etc.," are basically left with whatever function(s) they are capable of executing with raw "brain power" after this healing/re-routing takes place.

Now, if the brain has "healed up" they can function normally (or the way they used to); if it has not, they are left with gaps.

Importantly, if they have some gaps, and have not learned basic principles of compensation, these "gaps" often mean their lives need to be scaled back -- in terms of lowering expections with respect to school, work or other aspects of day-to-day living. It often means they must learn to "adjust" to all the changes, as well (which can mean overcoming depression, getting "adjustment counseling" and other things.

On the other hand, I know many, many individuals with brain injury whose brains have not "healed up," but who function at very high levels as a result of leaning and using compensations. In some cases, the person has severe injury and I know of several cases where they would be living in nursing homes -- were it not for the fact that they learned to compensate and regain *functional* recovery by doing so.

In other cases, the person had a severe enough injury that they were told they would never work again (or not at their former "level") or could not go to school. One of my best friends from my rehab. days (early 1990's), who had a severe injury, learned compensation skills and recetnly acquired a second professional degree, lives independently and is working as a journalist! All because she relies on compensations!

Outsmarting the Brain Injury

There are many other examples of people with brain injury who have basically "outsmarted" their injury by learning to compensate for the cognitive functions they have lost. Their brains have not "healed up." Their doctors predicted the worst (and are amazed their patients are doing so well -- chalking it up to being an "exception" in some cases). You are in a position to help your daughter outsmart hers too -- even if you do not have resources to get the kind of formal therapy you have received to date.

Family-based therapy focused on "functional recovery"

If your family will not be able to afford "formal" therapy, you will likely need to structure a family-based therapy plan. This is do-able. It can be afford-able. Lots of families have done this and will be able to provide assistance and guidelines!

Niki, you wrote:

"She is now up and walking and trying to run. She is also talking, and basicaly tests out at a 3 year, 3 mo. level when evaluated. Butttt..... it's clear she has a long way to go. She had out patient therapy for a while, and then we had someone come to our house to help, but now the insurance is done paying and she needs to continue to have these services. What are our options? We have six children and do not qualify for any aid at all through our state. I am scared she will not get the help she needs due to lack of money! HELP!

Kathy M. again:

I do not think there is any way to know precisely how much of your daughter's current function is the result of the natural healing process and how much is the result of the rehabilitation therapy she received. However, I do think everyone would agree that you can learn from other families who have "walked the walk."

By networking with other families you will learn simple things that can help now and down the road -- for example, how to be mindful of the negative effects (and sources) of visual and auditory over-stimulation, the value of "massed practice" (AKA "overlearning") when teaching persons with brain injury, the role of visual cues in day-to-day life. Many other things, as well.

Get on the Internet!

Start with the groups this site has listed as e-mail discussion list resources.

Then check out the Brain Injury Association's resources, including the ones for your state. See: http://www.biausa.org and http://www.biausa.org/States.htm

There are also reserouces in your state (internet and in-person support groups). See: http://www.biausa.org/States.htm#MISSOURI

Focus on finding other families who have structured home-based rehabilitation programs themselves and learn about what worked best for their loved ones. To find other families, two good places to start are the ASSIST-TBI e-mail list (which I facilitate) and also the CARE-TBI list (facilitated by John Lyon, the husband of Clare, who has a brain injury.

Hope this helps,
Kathy M.

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