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Hello to all,
I had to jump in after Delinda posted this blog info. I really truly have to say; YEP; it really matters whether you choose to live in the past or present and how you decide within yourselves and your family unit how you are going to choose to live! RE: The PTSD: I used to live in the past and every time I would see another possible FASD child; I also would cringe and hope that I would not be the one having to go through all the LEGAL IEP’s and all the school info once again.
YES: many families do live on eggshells waiting for the other shoe to drop many times. Our family has chosen now that our son is older and we have guardianship; that we are going to live like any other family unit. The way life was meant to be lived…freely. We still live day to day like many of you do; however; we choose not to let things interrupt our lives anymore.
As for Nutrition; I cannot agree more with all of you and VICKY M; as our family has now chosen to completely go “ORGANIC” in our lives. I am not just talking the foods that are said to be pure; but it must be CERTIFIED/STAMPED ORGANIC or we don’t touch it anymore! We can tell the difference. Eating anything other; makes us sick, literally.
I feel very strongly the need to be able to properly take care of ourselves so we can go on and maintain our family units and our FASD individuals. Who is going to take care of them if we don’t take care of ourselves?
Our family also has found a magnificent way in which to keep our family emotionally/spiritually going by having found a church family. Our thankfulness for these people goes much deeper/further than words would ever be able to express. They accept our son for WHOM he is ; not what he is or what he does/says etc. We have never had this type of support before. I feel this also can add years onto lives by having an outside source that one can literally attach to with out worries or hesitation. Our son even helps on Sundays at the end of services by cleaning up the Sunday School rooms and helping to organize for the next service/activity. Finding an outside source that we really, truly trust (those who know our family, know this was a HUGE problem in the past due to certain experiences) and can just be ourselves with has been a major change for our family.
Our lives have truly taken a whole ‘nother turn …all for the good. I contribute this not only the nutrition but to the letting go of the stress, to finding trustworthy friends, and to having pulled our son OUT of public school when he was entering high school to home school him (never regretted either) so we were able to go at our pace/time /not answering to others on outside.
PLease, do not think that this came overnight. It did not for our family. It took us years. It is always a step at a time.
Hope this has helped and hope our family can help at least one family to see and be able to experience some of what our family is experiencing.
With {{{HUGZ}}}} and love to all….KATHY KW>>WI
PTSD & FASD:
Coming to Terms with the Empty Nest
Dorthy Beckwith
I’m not really sure how to write about PTSD regarding myself. I do have flashbacks once in awhile at my job at Head Start…especially when I see sweet little faces that have the look of FASD, little ones who come with labels of ADHD, etc. And I cringe when I hear impatient tones in the voices of some staff about “difficult” children who I know are desperately struggling with sensory overload. Such remarks cause me relive the pain of struggling with the schools and know-it-all professionals with my affected children Christina and Tony. As we learned from the conference that Ann Waller and Dr. Andrews tried unsuccessfully to host in Idaho, there is just not much interest in FASD in this state. So, I try to be a little bright spot in the day of some of those little ones who just may be one of our kids, just as I appreciated soooo much those true professionals who were patient, understanding, and compassionate with my two when they were in school.
Our daughter, Christina, will be 23 in a few months. She was so bubbly and happy until her freshman year in high school. Back then, she was really gifted in music and ice skating. We had taken her to dozens of doctors, counselors and therapists. All of these professionals and I begged the school to provide an aide for her to keep her safe, but they refused. In an unguarded moment, some gang members trapped her in a vacant room. Nothing was the same for Christina after that. Even though she won her lawsuit, the money is of little consequence except it helps to pay the expenses in the care facility where she’s lived for the past eight years. After the physical trauma was superimposed on top of FASD, Christina lost all interest in music and ice skating.
My own PTSD triggers these days are from Tony, now a young adult who is so vulnerable to gang activity. I still have nightmares about him that wake me up - although they are more infrequent now for two reasons. First, he no longer wants to be a part of the gang he joined here, and second he decided to live in another state. He’s working part time at a discount appliance store and renting a couch from a friend who has his own apartment. It’s probably a real dive. But that isn’t the most important thing at this point. He’s safe, he’s living with friends and he’s not living with us. When Tony was living here, he had such an insatiable need for peer companionship that the illegal activities of his fellow gang members drew Tony into the criminal justice system and nearly drove us crazy. Happily, he has been holding-his-own in the community and has just now been accepted into Job Corps.
The amazing thing is that both Tony and Christina are both making progress toward finding their places in the world. Consequently my husband and I are relieved and can sleep through the night once in a while now that they are not under foot here at home 24/7. The future for Tony and Christina is uncertain, but we do our best to keep the faith. We know the journey is not planned by us, but by our Heavenly Father. And we have learned that life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.
Healing Directions
By Ann Waller
When I first started thinking about writing an article on Caregiver PTSD, I hesitated. I knew it would involve thinking back into the past–dredging up all of the mental anguish and physical suffering involved in the days when my primary responsibility was taking care of children with FASD and PTSD ruled my life. But I also knew it would be worth it, if I could help others find their own pathways to the level of health, wholeness and peace I now enjoy.
Actually, at that time, thinking “backwards” was the norm. I was stuck in ongoing, frequent trauma and crisis. (I started to change the “I” to “we,” but my husband’s way of surviving was being a workaholic, so I don’t think he was traumatized as much or as long as I was.) In the early years–pre-FASD diagnoses–I didn’t have a clue what was going on, much less what to do about it. As a result, being the “highly responsible” person I am, I became obsessed with thinking backwards, trying to relive the past—asking all those questions about what “went wrong” and the coulda/shoulda/woulda ideas that just might have changed the outcomes…or not. Even after the kids were diagnosed in their mid-teens, I was still taking on responsibility for what they did, feeling like a total failure, meanwhile racking up more and more PTSD triggers.*
When things deteriorated to the point I experienced painful bouts of rheumatoid arthritis, pulsing adrenalin rushes several times a day, irritating and limiting multiple allergies, chronic back pain, recurring yeast infections, suicidal thoughts, etc., etc., I decided that even the “natural” dietary supplement routine was obviously not working. The good news is that now, after 7 ½ years of pursuing complimentary routes to healing and wholeness, a drastic shift is taking place. Now I rarely, if ever, dwell in the past, analyzing and rehashing what I could have done differently and strategizing how I must be prepared at any moment for the unexpected. Most of my previous physical conditions are either drastically improved or gone. I am learning to live in the present and even look forward to the future, instead of dreading it!
This is a huge indicator of how much healing has taken place within me. I’m not stuck in the past now–automatically reacting to the PTSD triggers. The more I am healed, the more triggers are cleared, thus freeing me to deliberately respond only to the current situation (instead of reacting to the accumulation of all of them) and I look forward to the future…Yes, I actually have one! I’m currently a ministerial student studying for ordination and sometime after that’s completed, I plan to pursue a PhD in Health Psychology. I want to help others become more healthy and whole in mind, body and spirit. You know it’s all connected, right?
I will confess it really helps that we don’t still have our adult children living under the same roof with us, nor do we have responsibility for raising our grandchildren, as some do. But my hope is that the more we experienced trailblazers share our wisdom and the effective healing techniques we’ve found, the better off the next generations will be. They won’t have to flounder as long and let as much PTSD accumulate as we did before discovering what can really help avoid it or clear it.
This brings me to the type of “healing directions” I have found to be the most effective to promote healing and wholeness–those that can identify the root causes of the problems then release them and the emotions and beliefs attached to them at the subconscious level and/or within the body’s energy systems. Since my faith is very important to me, all of the techniques and approaches that I chose to use with myself and with others are either faith-based (sometimes with my own adaptations) or they are spiritually neutral. Of course, it is always important to choose a practitioner who you can trust and with whom you feel safe. Here is my Top 10 List (non-ranked) with website links for more info and to locate qualified practitioners:
• BioEnergetic Synchronization Technique (B.E.S.T.) www.morter.com/what_is_best.php
• Nambudripad’s Allergy Elimination Techniques (NAET®) www.naet.com/subscribers/what.html
• Neurofeedback: www.eegspectrum.com/IntroToNeuro/
• Emotional Freedom Technique: www.emofree.com/newcomer.htm
• Transformational Healing Method of Hypnotherapy: www.hypnotherapycenter.com/faqs_main.html
• Total Biology (not a technique as much as an understanding of how/why we get ill): totalbiology.ca/main/claude_sabbah_e.htm
• The Journey: www.thejourneyusa.com/
• The Work: www.thework.com/thework.asp
• Reiki: www.reiki.org/FAQ/WhatIsReiki.html
• ThetaHealing: www.thetahealing.com/about-ThetaHealing.html
Best Wishes for health and wholeness of your mind, body and spirit!
Ann
www.healingdirections.org
*PTSD triggers can be defined as anything our subconscious associates with an unhealed trauma or unresolved conflict. Until the original incident or issue is healed, resolved and/or cleared, these triggers can evoke the same subconscious response as you had in the original situation—panic, fear, worry, pain, etc. This automatic response can sometimes be so strong that you can actually be re-traumatized by it.
Moving Forward Toward Health, Hope and Healing:
By Delinda McCann
Early in December eight members of the FAS FRI board met to discuss the topic of caregiver stress and proposed healing techniques and avenues. We started with the current research on the topic of how stress affects the body at the cellular level and proceeded to an overview of the mind/body research. From our discussions we were able to define several directions for future action and advocacy.
First and foremost is the topic of caregiver stress. The stress of raising a child with FASD can be a killer. Jocie and I noted that our Post Traumatic Stress seems to be more related to events of living that everyone can face. The unique thing about FASD caregiver stress is that we often need to be vigilant 24/7 with responsibility for unpredictable, irrational children, on top of the normal life stresses. We can never fully sleep. Meals are disrupted. We live waiting on high alert for “the other shoe to drop.” In addition, with FASD, the stressful events we endure are often outrageously bizarre.
As life’s lessons go, we experienced a graphic real life demonstration of just how constant and strange the stress of living with someone with FASD really is. One mom needed to have her son with FASD with her at the retreat. She had recently faced some heavy duty legal issues and was about to take him to live with some of his birth family. While these big issues were obviously causing stress, it was his constant little FASD behaviors that were driving his mom to tears. Those of us who still had children at home did not seem to notice anything unusual going on with this young man. Those of us who have not lived with our kids for several years got a great reminder of how many children with FASD seek to be the center of attention all the time. The vigilance needed to keep this nearly adult child marginally socially appropriate and fully clothed was exhausting. It is this constant, grinding vigilance that prevents the body from resting and recouping, thus compromising its ability to cope with stress.
The goal of the retreat was to move beyond acknowledging the stress to looking at alternatives for managing it or treating it. We are a cynical lot, evidently. It took us mere moments to dismiss western medicine as a solution. Those of us who have faced life threatening health issues this year are well aware that relying on western medicine, particularly as practiced in the US, is not going to keep us alive and certainly not healthy. As we talked about what does help, our vision of seeking alternatives was validated.
It was at the point of looking at healing alternatives to help the caregivers return to health and wholeness that our discussions came full circle to the point where we all began when we made the commitment to raise a child with FASD. In looking at alternative or complimentary ways for us caregivers to return to health and wholeness, we explored the possibility that some of the techniques might be helpful for our disabled children as well. As Ann Waller was talking about Theta Healing I realized, that we were on to a plan that would help my daughter overcome some of the traumas in her life that we have been unable to address before because of the limits of her disabilities. (She has more than “just” FASD.)
It seems obvious when we stand back and talk about the issue of health, that we need to address the body mind and spirit as a whole in order for us to become more healthy. The reality of making a holistic approach happen in our lives is challenging in several ways. For me personally, I am constantly coming up against the barrier of my own childhood learning as I try to address the issue of controlling my hypertension. I have learned that my old thought patterns ie “If I just try harder, I can make this work.” and “good” values ie “Good girls don’t get angry.” lead directly to dangerously high blood pressure and stroke. Practicing different thought patterns such as knowing it is okay to give up or say no and throwing out much of what a “good girl” should or should not do, like stomping my foot when angry is lowering my blood pressure to that of a physically fit adolescent.
The FAS*FRI team plans to continue to explore this topic with the goals of keeping ourselves and others in the FASD community alive, improving our health and wholeness and finding new pathways to health and wholeness for our affected children.
Rip Van Winkle Revisited
Part 2: Waking Up from PTSD and Moving On
As you may remember from Part I, “my PTSD didn’t begin with cancer; it began the day I cried too much, when I was 21 years old.” After the doctor told me of the impending death of a second sibling, I blacked out and apparently started screaming and tearing up the waiting room. When I returned to consciousness awhile later and the nurses told me how I had lost control from the overwhelming grief, I was really embarrassed and made a strong commitment to myself. I gritted my teeth and thought, “I will never let that happen again.”
From that point on, whenever I was faced with deep grief, I gritted my teeth and stuffed my tears deep inside my heart and soul. It wasn’t that I thought I had done something “wrong” but I made a subliminal connection between my natural, innocent grief response of crying and losing control. When I was diagnosed with cancer, I didn’t cry one tear. I gritted my teeth and marched ahead for as long as I physically could. But a person can’t run from grief forever. My subliminal associations had unwittingly entrapped me and set me up for triggering PTSD last summer when I could no longer deny or escape the trauma in my life. Because I had subliminally blocked myself from a typical expression of grief, I had developed a kind of detached grieving response. It felt almost like an out of body experience. Tears flooded my eyes and flowed uncontrollably down my face–day after day, week after week, month after month. I was still so detached, I didn’t feel anything; I just “watched” the tears flow. At the time I didn’t realize what was happening, but I was headed toward a crisis.
Then, like Rip Van Winkle, I came to a point in my life where I just physically collapsed. My medical doctors, friends and family decided that it was time for me to look back and figure things out. I am now able to see how complex the subject of PTSD really is. But, for me, recovery from PTSD came down to taking a couple of major steps. I had surrounded myself with really good people and my first step to recovery was taken by following their advice–getting a good medical evaluation. After telling me that there was no new illness or physical condition, my doctors validated me by telling me to remember that I am a good, kind, loveable person and that I do the best I know how in difficult and traumatic situations.
It wasn’t that I needed to find out what I’d done wrong, so I could be fixed. Recovery from PTSD meant that I needed to be surrounded by people who were healthy enough to offer and give unconditional love and support while I was physically incapacitated and just let myself grieve about nothing in particular, and yet anything at all. Sometimes unconditional love means giving yourself permission to just let the tears flow and flow. At other times, unconditional love means being together with other people who genuinely know what PTSD means and validating each other. In my case, I didn’t really start to recover from PTSD and find joy in my life again until our FAS*FRI board met at Vicky McKinney’s house in December in order to gather the Collective Family Experience on caregiver PTSD.
It was at her house, surrounded by supportive friends, that I was able to take my second major step in recovery from PTSD. By listening to those who loved me and who let me talk, I was able to understand once again the difference between depression and grief. Grief is a process and in the 1960’s we just didn’t understand that. Besides, even if someone had told me that, I probably would have decided that I was just too busy to be interrupted by a lengthy grief cycle. The truth is that grief isn’t something you can hurry or shortcut. In our culture today, we are considered successful if we are good at multi-tasking. I am very good at that, but I couldn’t really heal from cancer or anything else (much less the trauma of FASD) until I set aside time with my Lord, my friends and my family and allowed grief to run its natural course to full completion. And now like Rip Van Winkle, I am awake, it’s spring and it feels great to be out in the sunshine again.
During the next few weeks other mothers who were at the retreat will share some of their experiences with PTSD too. We have set aside this little Blog as a safe place for all of us to share with each other.
Have you had personal experience with caregiver PTSD? What has helped you?
Rip Van Winkle Revisited
A Two-Part Story
Jocie DeVries
Part 1: Asleep in Seattle
You know how I can get lost in the concept of a children’s story–well this time it’s Rip Van Winkle. Did you ever wonder how Rip Van Winkle felt when he woke up from his 20-year nap? Did he sleep the whole time or did he wake up a few times, just long enough to make him aware of his depression and promptly roll over and go back to sleep?
The last time we talked here on the Family Preservation Blog, we were discussing PTSD and how disruptive past traumas can be to our psyche. We brought the subject up, we all agreed that it was a very serious problem and then we all went back into our private little spaces like Rip Van Winkle did. Even the Blog went to sleep.
After 42 years of caring for children with special needs and twenty years of advocacy for those with cognitive disabilities, I’ve come to the conclusion that the human condition itself leaves all of us with some measure of PTSD by the time we reach adulthood. We have a tendency to think we can compare traumas to see who has suffered enough to really “deserve” to have PTSD and who hasn’t. But it doesn’t work that way. PTSD is about trauma to an individual’s heart and soul, about something that hurts deep inside. And there is no way to compare or measure who hurts the worst.
I am speaking as an optimist, believe it or not. At least that’s what I’ve been all of my life. While I’ve been Sleeping in Seattle, I’ve come to discover that my own PTSD didn’t begin with cancer; it began the day I cried too much, when I was 21 years old. The life event that originally triggered my PTSD was finding out that my sister had an aggressive brain tumor and it was malignant…That would have been bad enough, but the fact was that I had previously lost a younger sister with an aggressive form of leukemia. The initiating conflict that set my PSTD in motion was the natural clash of my optimistic temperament and the impending death of a second younger sister within five years of the first death.
All of my life I was taught, and I totally believed, what the Bible says–that all things work together for good to them that love the Lord. However, an optimistic temperament and an otherwise idyllic childhood, along with this belief system did not insulate me from tragedy. Believing that things will work together for good in the long run is different from believing that only good things will happen to me. It took a long for me to figure this out and understand the different concepts.
Stay tuned for Part II. In the meantime, What have you experienced that might set you up for PTSD—what “clashed” and caused trauma to you while raising children with FASD?
About two weeks ago I got an e-mail from Jocie asking why the blog had been so quiet. I confessed that I had been hiding under my covers and having flashbacks. We discussed my symptoms and decided to work on this thread related to Post Traumatic Stress Disorder (PTSD).
How did I turn into such a blubbering stressed out mess? The answer to most parents of a child with FASD is easy. Can we say sleep deprivation from 24/7 surveillance? It is not just the children themselves that stress us out. It is the professionals who just don’t get it. We can point to meetings with the school, law enforcement, social workers, and doctors. At FAS FRI we call these the intervention touch points. Maybe it is time to rename them the PTSD stress points. But why am I so stressed now? Jamie has been living in her own apartment for several years and I have not spoken to the police for 30 months - In A Row.
“Why now?” has to do with getting sick seven months ago. I knew that if I was going to live I would have to do some serious life work but had no idea what that might be. My healing journey started with my rheumatologist. Instead of telling me that my symptoms were aggravated by stress and sending me home, he gave me some referrals. So far I’ve seen a stress management doctor for biofeedback, an energy management doctor, and a back pain specialist.
It is the stress and energy management doctors who have turned my life inside out. Before them and their silly little exercises I was doing quite well at suppressing my memories, thank you. Of course this was taking every ounce of energy I possessed but by holding all my muscles cramped tight I did not have to deal with what has been imprinted on every cell of my body. It is time to let go.
The exercises should have been easy. They were not. They sounded like so much mumbo jumbo especially the one where I was supposed to stop what I was doing five times a day and repeat “I am wonderful, I am super, I am fantastic. and I love myself.” This may be an easy thing for some people to do and if it is easy for you that is great. It was not easy for me. It was almost impossible to force myself to do this simple little exercise. My experience as a mom told me that if something that sounded so easy was that hard for me to do then I probably needed to do it. UGH!
It was the few simple exercises especially the self affirmations that set me free to remember, feel, and process what I have been living through. Of course I am more than a mom with a child (now and adult) with FASD. I have had family traumas that come bubbling to the surface and make me angry or make me cry and which had nothing to do with my FASD child. Some of my work in the church rivals anything we encounter as parents of kids with FASD, but, come to think of it, I am convinced that FASD was a factor in the rapes, murders and suicides happening in our church community thirty years ago. Those memories have come flooding back and I am emotionally up and down and generally unstable.
Fortunately, I have had the stress management doc to help me deal with all of this. He keeps assuring me that I am not crazy. These things really have happened and the emotions that I did not express at the time are going to come out. It is best that they be expressed as tears, anxiety or anger rather than another stroke.
I know that I am still in the middle of this stress muddle and may have much more work to do before I am well. However,the peculiar thing about all of the depression and anxiety is that with all the appropriate support I’ve had, they are getting boring. I am just not into self pity. My exercises are self affirming not pitiful. I am ready to be done with this garbage and live.
Sometime in the past few hours the very tough lady who maintained her poise while dealing with all that hell had to throw at her, has come back, taken a look around and said, “Yup, that is what happened. I’d do it all over again. I handled nearly impossible situations better than many if not most people would. I am proud of myself. If I need to cry now, I am tough enough to do that. If anxiety wakes me up in the middle of the night I am tough enough to be anxious or afraid. I have worked for it. I have earned the right to grieve or be anxious. I will do what I need to do. I can and will survive.”
Delinda McCann
Interventions That Work in 2008
From the FASD Wisdom of Practice
Reprinted from FAS Times, Spring 2008
By Jocie DeVries
Before any program or service can be successful, FASD must be diagnosed or at least acknowledged as highly likely and then taken into account as modifications are made. Assessments need to be made as to whether or not more than one “T” issue is involved.
1. Traumatized Teens with FASD
When a youth has problems that severely interfere with daily life or they repeatedly display disruptive behavior without any obvious predatory intent, a complete mental health evaluation needs to be made to determine the cause of the presenting issues, whether it be abandonment, current or past abuse, and/or some other trauma. Standard approaches to healing these memories may work. Some parents report excellent results with alternative/complimentary approaches that work through the subconscious.
2. Tipsy Teens with FASD
Outpatient treatment programs may work for a few teens with substance abuse problems, as long as they are cognitively able to understand it and willing to cooperate with changes in their environments, activities and friends that have contributed to the situation. If not, or if withdrawal is a concern, inpatient treatment program may be necessary. Either way, long term supports, like supervision and accountability will be needed. 12-Step programs can be helpful, if they connect with a trained mentor.
3. Truant Teens with FASD
Diversion programs can be very effective with realistic requirements, good supervision and accountability, with the understanding that if they violate the terms, they will go to jail for a few days. If school truancy is involved, then their academic and school-based social issues also need to be addressed. Many times the reason teens with FASD fail in school is more social/behavioral than academic.
4. Troubled Teens with FASD
When co-occurring mental health disorders are suspected, we recommend a full neuropsych evaluation, done by a neuropsychologist who understands FASD. Follow-up therapy can be provided by any mental health professional who understands FASD and co-occurring disorders. It works best when professionals gather information from and consult with the family in this process. Based on the evaluation and consultation results, professionals can recommend the type and length of medical treatment and/or psychiatric therapy with specific timelines and goals, not to just “stabilize them” and send them home with more medications and no behavioral supports.
5. Treacherous Teens with FASD
Since violence and predatory behavior are not core FASD traits, if this type of pattern exists, a secured facility will be needed to keep themselves and others safe until the co-occurring disorders can be addressed and treated. The most important things to remember are (1) just because they are violent at this time, it doesn’t automatically mean they can’t change with appropriate treatment and (2) it is critical that a family member or someone continues to love them through this process. Unconditional love makes miracles possible!
Riding the Wave of FAS Awareness
By Delinda McCann
Last weekend my family went to the ocean. On the only sunny afternoon we sat on the beach and watched the surfers. I noticed they rode in front of the crest of the wave. As I watched I thought about my life and realized that much of my angst has come from surfing the wave of FAS.
I was raising my daughter before there were parent support groups. She was 15 before Ann Streisguth invited parents to a conference about FAS for the first time. She is a settled adult now with issues that most of the parents I know are not yet facing. The side of this coin that I keep forgetting is that I am a wee bit older than most of my friends who are raising kids and young adults with FAS. I am surfing the wave of knowledge about parents my age with middle aged kids with FAS. (Hint: If you thought FAS with puberty was bad…FAS with menopause is coming.)
This age thing is one of the reasons I love Linda LaFever who is a couple years older than me and Jocie DeVries who is some months older. . It was at Jocie’s “no more chemo” party that the shock of surfing that wave hit me. Linda mentioned something about her stay in the hospital when she stopped breathing. This was Jocie’s party so I was really really downplaying the fact that this was my first trip away from home after having a stroke.
Hey! We are not that old! We sound like a group of octogenarians. We are not ready to retire yet. It will be years before I am eligible for Social Security.* What is going on here?
I found part of my answer to what is happening to me in the office of my stress management doc. The first step in my stress management program was a lesson in biofeedback. For those unfamiliar with biofeedback, the machinery is similar to a complicated computerized polygraph. I was supposed to try to lower the little green lines on the computer monitor by relaxing. I was actually pretty good at this exercise. I kept working at relaxing and the lines went lower.
The doc asked me about my gardens and the lines went lower. I talked about my dogs, poodles, and the lines went lower. The doc asked about my daughters and the lines made a little blip then went lower as I talked about my birth daughters. Then the horrible rat of a meany doctor asked me about my foster daughter. He fully deserved what happened next. The little green lines shot straight up to the top of his monitor and his whole system crashed. Ha!
Can we say I have a huge load of stress from years of 24/7 supervision of my foster daughter with FAS? Yes, I am learning to consciously relax and my blood pressure is not nearly so volatile but it is taking huge sums of money for doctors and a challenging level of self awareness for me to gain a fragile level of health.
Looking at my experience and that of those who were raising kids the same age as mine, the topic of “Family Preservation” takes on a very fundamental meaning. Like Jocie’s and Linda’s families mine came very very close to loosing their mother.
Will the earlier support available to families today help alleviate some of the stress? I am not sure. Support is good but parents are still working 24/7. It is the constant pounding stress of thinking you have solved a problem only to find a new bigger uglier problem take its place. It is the grieving over and over for who the child could have been. It is the battering of our hopes that are raised with one success only to have them dashed again and again by this disability and the wall of ignorance and discrimination our kids face.
My question is whether or not we can intervene at this fundamental level of family preservation so that parents raising children with FAS can live out their full lives with some level of health. What will this intervention involve? Perhaps some research to document that what I am seeing is real. It will involve the collective family experience in finding interventions that work to relieve stress while keeping your eyes on your teenager. Ugh.
It will involve documenting realistic expectations so we do not have our hopes destroyed over and over. It will take community education and awareness to eliminate the barriers of ignorance and prejudice. I think together we can preserve our families at this most basic level. I at least am willing to take on the challenge as long as I can take breaks for my breathing expercises.
*Okay maybe I exagerated a bit on how long it is before I’m eligible for Social Security,
September 9, 2008