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LuWenn Jones
Cedar City, UT
I am married, mother of three children, one of whom has severe autism. I am a disability advocate, not only for those with autism, but for all those with special needs. I work with other parent leaders to improve services and to work for systems change in our state to improve the quality of life for families who provide care for individuals with disabilities.
Recent Activity
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LuWenn commented on the article |I am so touched by this post! I don't think I have autism, yet I relate so well to those feelings as a parent of a child with autism. I often find myself unable to juggle all the balls we are expected to manage at once in order to assist our children with their needs, so I, too, become somewhat catatonic for a few days or weeks at a time until I am able to rise out of depths and cope again with the challenges and the many people who bombard our lives. (I do sometimes feel that I have developed a personality disorder from dealing with so much frustration on so many fronts, but my normal childhood belies that fact that I have autism, so unfortunately I can't blame my inability to cope with any developmental deficit. Is it possible that we as parents start to take on the characteristics of our children simply because of the isolated and frustrating lives that we lead?
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LuWenn commented on the article |
As autism is a multi-faceted condition, it makes sense that a multi-faceted approach is needed to treat it, and/or to treat it symptoms. In the absence of knowing it's cause(s), we are left with the option of treating symptoms and moderating effects. I personally advocate for my own daughter (who is severely affected and has co-occuring mental health diagnoses), to have a multi-pronged treatment approach. This includes intense education intervention to assist her in overcoming the core deficits of autism; family and community supports to help her live as functional and independent life as possible; medical, biomedical, nutritional and pharmaceutical treatments to help her be physically and mentally stable as possible. Are we successful in providing this? Rarely do we get all of the components working together at one time. But we try. It is on our ongoing mission to try.
I don't think anyone should rely solely on any single component of treatment, because to do so may be limiting a child's potential. Before we started medication, our daughter's education programs were not as effective as they could have been before her anxieties inhibited her learning processes. Before we started addressing her food intolerances, her medications were not as effective as they are now. Having after school support for her enables our family to function more normally and continues the structure of her day, giving her more learning opportunity and inclusion in the community. It is all interconnected and a part of her development and progress.
Would I rather have a medication that targeted the immune system deficits specific to autism spectrum disorders, if such a thing could be identified? Absolutely! Would I prefer to have safer pharmaceuticals with fewer side effects and that were developed for younger population, since we started medicating our daughter at around age 5? Yes. Unequivocally. So bring on the research. This population is not going away, and parents need these options and children deserve to be safely medicated. -
LuWenn commented on the article |Yes, you are right. We de-institutionalized without fully developing the needed community supports for those individuals coming out of the ICFMRs. I believe we continue to need all levels of support. There will always be those who require the stability and support of an ICFMR type of environment, and although we continue to have those who advocate strongly for shutting our one remaining facility down in Utah, I continue to advocate for keeping it open, and if my daughter needed that level of care, I would feel fine about having her placed there. It is a wonderfully run facility, in my opinion, and those need it, need it. Bottom line, it shouldn't matter the cost if that is the level of support needed to maintain one's safety, medical care, and stability. Most of the people who thrive in a structured facility are those who have co-occuring disorders (developmental disability with mental health issues or medical issues that are not easily controlled, and who do not have an adequately supportive home environment, for whatever reason). As a society, we need to start recognizing and helping others recognize that individuals with disabilities need a wider variety of options for a lifespan continuum of care.
In a supported living situation, one can still have 24 hour support--it is just not live-in staff. The individuals would have staff coming in 6 or 8 hour shifts to check on them and take care of their routines. Some of that rotation can even be taken care of by family members. The point is, we need to have more options than facility/institution, group home, family, or homelessness--because in the "real world" for NT individuals, there are a huge variety options. We ought to be looking at a huge variety of options for individuals with disabilities, too.
The same is true in education when we said everyone should be mainstreamed. It wasn't very many years before the pendulum had to swing back and we realized that in order for real learning to take place, there were some students who needed placements in more isolated settings, so now we have "cluster" settings and autism programs and special ed classrooms again.
The great thing about the pendulum is it DOES swing both ways. -
LuWenn commented on the article |
One interesting trend in our area is to move away from "group homes" to "supported living" environments, where even fewer residents might share a living situation. Two or three individuals for instance might combine resources to share rent on a home or apartment, and direct service staff would provide support in the residence. This enables them to avoid all the zoning issues and allows for a more inclusive environment. It usually works well, although one such situation in our community is still receiving resistance from the neighborhood, because people don't understand that it is not a licensed "facility" but truly just three individuals paying to live there, who happen to need assistance from staff to meet their needs.
The option we have chosen to adopt is that we recently designed and built a new home, with a separate two-bedroom apartment attached to it. Since our daughter is only 13, we do not intend to transition her to the apartment for some time, but eventually we do plan to transition her to the apartment with a caregiver. In the meantime, we rent the apartment to a young couple, who in exchange for slightly reduced rent, give us a number of hours of respite care each month. The wife of the couple is also on our payroll for our daughter's state-supported services, so she also is paid for some hours of supported living assistance each month, which enables her to assist our daughter with some of her community-inclusion and independent living goals (approx. 6-10 hours/week). If the time comes that as an older adult, we or our daughter want even more independence from one another, we will cross that bridge at that time. This feels really good to us for now, however. It will allow her to have a space of her own, but we will still be close enough to oversee her care.
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LuWenn commented on the article |Actually, I think you may have misspoken. Perhaps you meant the undetected mental health problems of the person who administered the medications, the grandmother? I suppose we could also say there was a lack of judgment on the part of the person that left this vulnerable young man in the care of someone that unstable, but then again it begs the question, was there no other choice? Were there no other people in this young man's life who could see that his caretakers were living this close to the edge? And if they could see it, why was no one willing to step forward and give relief. And you are right. It does not matter that the boy had autism. What matters is that a family needed help and did not receive it in time.
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LuWenn commented on the article |Kristina, I so enjoy these little glimpses you give us into your life with Charlie. My life with Elaine in rural Utah is different, yet we have common threads as well. "Vacation" has come to mean certain things for her, too. She has an extensive CD collection and will entertain herself for hours now listening to music. A shopping trip, a fast food run, a couple of long showers, some reading, and we have pretty well taken care of the day. She would ride around all day in the car listening to her iPod if we would let her, and one of her favorite things to do is go to the doctor (a 3.5 hour trip one way to Salt Lake City, buy a candy bar in the lobby from the vending machine, see the doctor, head home, stopping for dinner along the way). We make the trip every two or three months. She now brings me my bag, her iPod, and requests this trip frequently (Salt Lake City? she will ask hopefully...I have to just shake my head and say "No...let's go to Wal-Mart instead.") She will usually be diverted, since she knows she gets to take her own shopping list to Wal-Mart, but it's not the same as going fast on the freeway for a few hours.
I thought you might enjoy reading our experience taking Elaine to her "first dance" last week.
http://leadingwithmyheart.wordpress.com/2009/02/20/first-dance/ -
LuWenn commented on the article |My daughter (13, severe, non-verbal) started menstruating at age 10, but started having hormone issues at least a year prior to that. When I tried to discuss the possibility of that with her doctors and prepare for possible birth control options, they all assured me we all had plenty of time, because she had not yet started "developing" yet. I could, however, track her mood swings by the calendar. She was experiencing severe episodes of aggression and I was fairly certain migraine headaches on a regular monthly schedule for months. One month she was particularly difficult to deal with, and sure enough, that was the month she started her cycle. She did not have breasts or pubic hair, but she was definitely menstruating. Since no one had been willing to help me prepare, we just had to figure it out on our own. She would not wear pads, and we just dealt with a lot of mess until we could get her to wear tampons. Unfortunately she learned all too quickly that she could remove those herself. Then, of course, we had to worry about her vulnerability to abuse if her caregivers were taking care of her. She really was not willing to let anyone but me take care of her hygiene needs, which made school difficult and made me completely tied to her schedule each month.
She was allergic to every birth control pill; we tried the seasonal patch, but we could not find a spot on her body where she could not manage to remove it. We also were constantly fighting our insurances--both primary and disability medicaid on whether or not they were going to cover that each month because she was "too young to need birth control."
With the onset of puberty, her bipolar tendencies exploded into the full-blown disorder. By the time she was 11, we were in crisis, considering a group home or facility placement, because I felt I could not keep her safe and stable, and my other children were terrified of her constant aggression and outbursts.
We have struggled to find medications to stabilize her, and she is doing much better. We took a bit of a risk and had an IUD inserted last summer and it has made a huge difference for us. She has not had a period for 7 months, and her PMS symptoms are extremely mild. If she does start to have periods again, they should be short and light. Best of all, since the IUD procedure worked successfully, it can stay inserted for up to five years, which gets us through middle school and a good chunk of high school. Then we'll deal with the next step! -
LuWenn commented on the article |The other issue that it often comes down to for us (and many other families) is, we aren't just mortgaging our home and our future on what is essentially a huge risk. We have two other children, who deserve the best future we can give them. We can't mortgage their futures, their college savings and their immediate needs at the expense of what it costs to treat our one child with autism. Our children with autism do not exist within a vacuum. They exist within the infrastructure of a family, extended families, and communities, and their "treatments" must be put into those contexts as well.
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LuWenn commented on the article |
I have recently started suggesting (somewhat tongue in cheek, but maybe someone will take me seriously) that perhaps all of these treatment centers could start offering their services on a "pay only if you are satisfied with the outcome" basis. If we get the desired outcome from a treatment, we'll gladly pay for it; if not, we'll move on to the next one and try it out. After all, aren't there enough children being "cured" by each and every one of these programs that those thrilled parents can pay the fees with their books, TV interviews and conference presentations? The rest of us will pay when we find OUR magic pill, but we shouldn't have to pay for all the duds along the way. It seems to me that if a medical professional truly believed in his or her oath "first, do no harm" they might be considering a slightly different approach in the treatment of autism. There is a great deal of harm being perpetuated on families who are just simply desperate to do something...even if it's the wrong thing.
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LuWenn commented on the article |I am trying not to think of it as a waste of time, even while I know this must be devastating for the families on so many levels. My hope would be that it will help people turn research in new, better direction, and that doctors who have been perpetuating this to families will stop so we can put the vast resources that are being put into this research into seeking the real cause(s) of autism. I believe if doctors started asking the right questions of families about early childhood development, they would be able to identify that there were signs of autism prior to the vaccinations, and we would be able to treat children with autism according to their learning needs and their medical symptoms without confusing the two so much, and we would also be able to help parents seek and advocate for long-term supports, recognizing that while many children with autism will make progress, most will never get through life without additional supports beyond what their family will be able to provide.
