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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,
August 22nd, 2008 at 2:55 pm You are living my life! I firmly believe I have post-traumatic stress disorder as a result of my son’s behaviors. He has absolutely no impulse control and is a firestarter on top of everything else. No wonder I feel 100 years old sometimes!
August 24th, 2008 at 9:08 am I think most of us have some level of postraumatic stress disorder.
August 24th, 2008 at 9:52 am Oooh. good one Delinda. You have a way with words that always taps into my conscious and unconscious musings at the same time. My kids with FAS have been up and out of the house for about ten years now and its only been recently that the post traumatic stress triggers are manageable even a tad. For so many years, every time I experienced a happy, relaxing day I felt this dread that the other shoe would drop a crisis into my lap as soon as I attempted to smile (which I’m sure to others came across as a grimace or facial tick most of the time). Hey maybe that would make a new screening tool. Any woman who has a nervous facial tick would be suspect as a caregiver of an affected child. Hark! I think that black humor means I need to go back for more therapy.
September 8th, 2008 at 6:49 am Liz is now 22 and I was hoping Delinda we would see a settling in - MEN-O-PAUSE - yikes - I got through that after “stress surgery” with my ovary removed - my first encounter with laying down my PTSD in the 90’s…Triggers really do exist - THEY’RE BACK - AFTER FOUR YEARS SHE IS SLEEPING IN HER OLD BED - recently the county asked if Liz could come home for the lebor day weekend “between programs” That was two Friday’s ago - she told the county she wouldn’t be successful without more programming and didn’t want to sit in adult foster care and rot like she had before - she left there at 78 pounds in April and had to be refed for two months - long eye opening story. Poodles eh? That’s how I survive too big huge laughing standards that like to think and play healthy sane tricks on me. In any case I started my own prgramming - because she needs it and I need it - Best to all with ADULT children and the lifetime disability of FASD. Tomorrow I get my The Whitest Wall book from the Printer for 9/9 It is real!!!!
September 11th, 2008 at 8:48 am I have only recently recognized the impact that raising a child with fas has and is having on my life. I learned early on that this baby (4Mo the first time, 7 months when she came back to us for the long haul) would impact my life with her many health problems, weekly weight checks, feedings every 2 hours around the clock, therapy 3 times a week, and biweekly visits to the specialists that were 4 hours away from our home. Not to mention regular visits to local doctors. This was exhausting, but I was young then (only 49 years old!). Because we had attended a conference on FAS that you all had presented in Jefferson City, (the first and only one ever anywhere close to us,) I thought I was somewhat prepared and knew what I was getting into. HA! Because she was getting lots of early intervention, I just knew she would be different. I have told people recently that I knew this was a lifelong commitment we were making, but somehow I never expected her to grow up. Not that I expected her to die prematurely, I just expected her to remain a small child who could be somewhat controlled.
September 11th, 2008 at 9:21 am Sorry, I am brain dead when it comes to computers and frequently push the wrong button! To continue, this is 14 years later, and we now have a daughter with the mind of a 6 year old, the judgment of a 2 year old, and the hormones and attitudes of a teenager! And I am not young any more!! She requires constant supervision, (but I like snakes) is extremely hyper (back flips on the couch, cartwheels in other peoples living rooms), and has just about exhausted every medication out there. I am worn to a frazzle,(we also have an eighteen year old son who has reactive attachment disorder and multiple other diagnosis) and I find myself overreacting to behaviors that a few years ago I could handle. When the baby is screaming (did I mention that 24 hours each week I keep my 2 yr old great niece that my sister is raising along with 3 other grandchildren from her 2 children that she adopted who had fas) back to the screaming baby…my daughter does not understand that a 2 year old does not want to be held, hugged, kissed or patted continueously, so when the baby screams, I find myself screaming at my daughter who truly does not know that she is doing anything wrong. She wants to hug and kiss everyone all the time. Unless of course. you just told her “No” and she is sticking her tongue out at you or spitting at you. Okay, enough about me. Thank you for letting me vent!! If anyone has any strategies for living with a severely delayed teenager with fas, I would love to hear them. In the meantime, I have the assurance that I am not in this alone, and God does not put more on us than we can bear! Tho sometimes I think he thinks more highly of me than he ought!
September 17th, 2008 at 10:13 am As I watch my health fail, I am reminded of all the stress I have been under having 6 chidlren with an FASD. I was proud of the fact that we kept families together and adopted these children from teh foster care system. I was also proud of the fact that my children did so well, at home, in school, and in the community with very little help from out side agencies. But as they turned 13-14 years old, we were watching our children whirling out of control. Thank God, I did all the leg work ahead of time to ensure we had services in place. It was too a point where I would start shaking when I heard their feet hit the floor in the morning. I worried that one day my husband would not come home from work becasue he didn’t want to deal with it any more. We were social isolated. We became the dysfunctional families they came from. Of the six children, two have been placed out of home. One went to a mental health group home which provided minimal support and the results are an out-of-control adult living in an adult mental health program and running the city streets. Another one went to a group home that was through Dept. of Social Services with a MRDD component. Although they maintained her safety, she has not progressed in the three years she has been there. The OMRDD component was not the piece I had hope for, to help her move into a independent living situation thorough the MRDD agency. So I have become her case manager and have taken over doing the assessments and referrals to help her to move on. Tomorrow will be another sad day for us as we move our 13 year old into a RTF program. He spent 7 months in a psych hospital while they tried to figure out what to do with him. What they did was over medicate, which have not shown to be effective in helping with his aggressive, obessive behavior. So while I work at getting him into a residential school, he will live with 24/7 staff to mainatin him. I am reminded of all the trainings that I attended that asked parents to parent their children with FASD differently, not harder. Yet, as programs try harder at what they know, our children are only being maintained. I have enjoyed FAS*FRI over the eyars and want to thank you for this opportunity to “whine” :)
September 26th, 2008 at 8:19 am I cried and cried and even though I have not yet gone to an FAS support meeting and fully intend to, I identified with your story. You gave me a gift by letting me know I am not alone. I did not even set up my computer when we had to move from our house to an apartment so that I could chat out there. I have moved and stay with sister, so not currently employed, I have looked at the websites. Thank you for sharing.
September 26th, 2008 at 3:19 pm What can I add? I just returned from a month stay in Australia where I was lecturing and consulting on FASD with Aboriginal communities. My 30 year old “adopted” daughter has not been without my support for more than a week or so in the last 10 years. I tried to call her several times but all phones were no longer in service…no surprise. I did receive a fabulous message from her saying her and her twin 5 year olds (one with a disability. Creator, what were you thinking!)and their father (who also has an FASD) were at the park, in the sun, having a great time. I made a decision not to check my voice mail again until I returned home as I wanted to keep that image in my mind for the rest of my stay. I also share the dread of the shoe dropping and attribute almost every gray hair to this beautiful, heroic young woman, my daughter. Glad to know I am not alone.
October 7th, 2008 at 8:09 pm Dianne said she has one adult child in a group home in the mental health system. That is where my FASD daughter (21) is and she, too, is basically given minimal supervision and spends most of her time just running the streets. Though she has been out of our home a whole year now, I never really can relax because her life is such a roller coaster ride. She is off on one tangent after another. She did some vandalism a few months back and spent two days in the County jail. Then she tried to join the Army and nearly succeeded (which would have caused her to lose SSI benefits we worked so hard to obtain!). She almost got married to an alcoholic -’former’ alcoholic she says. He is in another group home, one for drug and alcohol abuse and unfortunately, their relationship is still on. When you try to give her common sense counsel, it only makes her angry and verbally abusive. Sometimes I feel like just letting her go. So tired of all the turmoil-tried of caring and her not understanding. Thanksfully, the staff listens to my concerns and are responsive, and ARE beginning to see her problems and understand FASD. Still, the program is not set up to handle people with FASD -just too much freedom and not enough activities to keep her out of trouble and off the streets. I worry every day that she will leave that home and end up a street person eventually. She lives in denial about FASD and is convinced she can live on her own. Guess I am just resigned to this situation- that I will always be waiting for the other shoe to drop…it always does eventually. We deal with the next crisis, things settle down for a while and then we go through it all again. This is just how life will be for us now and I have accepted it. But it is a heartache everyday though..one you can’t escape because you love your child. Just the other night, I woke up after a nightmere about her. She was back living at home, became angry with me and I was panicked trying to dial help on the phone while she was shouting and wrestling it away from me. When I woke up, it was like all those fears and panicky feelings had come back big time. Took me a while to settle back down again. I marvel now that I lived though those years. It is much better that she is not here, but it will never be a normal relationship or a normal life. Some days I mourn that she is no longer here and wish she could come back. But that would never work because she can not change and I can no longer cope with it. I am too old (61) and my nerves are just shot. So I do the best I can for her from a distance. Write her every week, take her phone calls, take her out to eat every few weeks, buy her things she needs, call and advocate for her with her program when it seems necessary…that’s all I can do now. That… plus praying and trusting God to take care of her.
October 21st, 2008 at 9:33 am Thanks for the responses. We can gather strength from each other and glimmers of hope that someday our children will have a happy life. I believe that in theri chaos they might be happy because that is how their minds work. I guess that the chaos is familar so they are comforted.
December 14th, 2008 at 7:06 pm Hi Jocie, I just rec’d your beautiful “In-Between Times” and I have just one thing to say….The ladies in Washington State may be all grown up and totally self-confident, but this chicken is still very immature. Please don’t even think about departing from your chicks….we will always need you! With blessings, Jeanne