Hope Starts With Acceptance
Does one strive to do everything one can to cure, heal, recover a child from autism with the goal of the child “losing” her or his diagnosis? Or, does one learn to accept that one’s child is different, disabled, autistic?
Parents and others in the autism community tend to align themselves with one “side” or the other, and whether one puts oneself in the “cure” camp or the “acceptance” one tends to determine the types of therapies and treatments that one pursues. Be a “curebie” and you’re an annual attendee at DAN! conferences and (whether or not your bank account can afford it) are booking a flight to be in DC for the June 4th Green Our Vaccines rally sponsored by organizations with names such as Talk About Curing Autism, the National Autism Association, and others who state that vaccines or something such as thimerosal in vaccines causes autism. And, it may well also be the case that you’ve a strong belief in intensive therapy and early intervention (most recently espoused by the author of a new book) and, perhaps, in Applied Behavior Analysis or ABA.
Conversely, say that you just plain and simple accept your child being autistic, disabled, different. You don’t see every single self-stimulatory behavior as a problem that needs to be corrected into something “appropriate”; over time, I’ve learned that Charlie’s humming and pacing and tapping are his ways to comfort himself, due to an overworked sensory system and to his anxiety.
I wrote “learned” because, until Charlie was about five years old, I thought it imperative that he only “display appropriate behaviors” in public and generally as much as possible. We did intensive ABA (40 hours/week) for a year and a half, then preschool with an aide and some 20 hours of ABA along with speech therapy and occupational therapy. Charlie was four when he started special ed preschool; by this time, we had moved back to New Jersey from the Midwest. Charlie has remained in special ed classes and will for the rest of his education. He’s always had weekly speech and OT sessions. His hours of home ABA have fluctuated over the years (he currently is not receiving any) and we’ve tried some social skills groups, though it’s been hard to find one with children his age who have the same level of speech skills.
We take Charlie to all kinds of places—most recently Maryhouse, one of the two Catholic Worker houses in lower Manhattan, for the Friday night meeting, though Charlie ran in and out the front door after seeing a cat in the entranceway. Charlie does sometimes verbalize at a high volume (last Saturday with high-pitched shrieks) and my response has evolved. Once I sought to “ignore” these; now I understand them as communicative efforts, and try to in turn communicate that I’m glad Charlie’s telling me something and that he doesn’t feel right about something.
Perhaps, over time, a parent learns to perform a kind of dance between encouraging a child to learn and knowing when to let a child be as he or she is? Perhaps, whatever gets said about “cure” and “recovery,” at some point you think, difference is difference. I’d rather Charlie not screech in public, but I am glad that he’s got that desire and drive to express himself.
There’s hope for every child who has autism, writes Jean Marino in the April 25th Buffalo News and I completely agree, though Marino describes autism in terms I prefer not to use. Marino’s 13-year-old son Zachary has autism, which she describes as “kidnapping alarming numbers of children and holding them captive” and as an “invisible enemy” and a “blanketing world”—-as something that takes away a child. Marino says she found hope by starting to do things to help her son (she lists supplements, special diets, treatments, and therapies, without going into specifics) and writes this of her son today, and of how she negotiates “the dance” of trying to change a child, and of letting be:
Eventually, Zachary stepped out of his world and entered ours, however, he always has one foot still secure and planted in his. That’s OK. We have great hope for his future. Through the years, Zachary has met every obstacle and has overcome each and every one. He is now 13 and continues to improve every day.
Journalist Barbara Fischkin’s son Daniel Mulvaney was, as she writes in the April 25th Huffington Post, just diagnosed with autism as “Bill [Clinton] was in the final lap of his presidential run.” Fischkin writes that “autism is decimating a generation of children” and that autism is “an epidemic and in comparison it is making polio look like a sore throat.” Again, these aren’t the sort of ways that I see the increase in the prevalence rate of autism and I have a lot of hesitations about comparing autism to other medical disorders. Fischkin, presuming competence, writes this of her son now:
Dan still does not speak although he now gets out a few guttural utterances, all of which thrill us to no end. He does sleep better than he used to though and was not awake when the word autism was uttered on Tuesday night.
In the morning I told him what Hillary Clinton had said.
As is often the case, he did not reply or react.
I know though, the way mothers know things, that he is thinking about tomorrow. About a speech that could lead to action.
Charlie hasn’t seen too much of the presidential candidates (no TV here….) though Jim and I have been talking plenty about them. Charlie tends to be drawn to people who look like him (I have wondered if one reason that he is so very fond of his current class is that three out of the five students in it are, Charlie included, Asian American).
We’ve got a lot of hope around here.
Tags: asd, asperger, autism, barack obama, conspiracy theory, disability, election, employment, health care, hillary clinton, Insurance, john mccain, Parenting, pdd-nos, Politics, presidential campaign, VaccinesRelated Stories
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30 opinions for Hope Starts With Acceptance
kim
Apr 27, 2008 at 8:59 am
Kristina–
Thank you for this post–my instincts make me fall into the “acceptance” category–but I am often filled with self-doubt when well-meaning family and friends try to push every new autism “treatment” my way–thinking it might “cure” my son. We do what feels right for our family.
I love him the way he is–I have learned so much from him, I’m a better person because of him, I’ve met many amazing people because of him and most importantly he’s a happy boy.
Reading that another mom feels the same way is always helpful to my state-of-mind.
Mrs. C
Apr 27, 2008 at 9:17 am
Wrote a post on this article in my blog. I wrote it there because you might not like it here. :]
PS having a hard time with “acceptance” as yet another one of my children displays symptoms.
Kristina Chew, PhD
Apr 27, 2008 at 9:47 am
@Mrs. C,
Thanks for mentioning me—-just yesterday we were speculating once again about how it would have been good for Charlie to have a sibling. Often I think about how it’ll just be him at some point in the future (sorry, that sounds too gloomy—-)—hence our thoughts of him getting to know my numerous cousins in California better.
María Luján
Apr 27, 2008 at 10:42 am
Hi Kristina
I consider that camps are somehow differently described, especially when talking about moderate position instead of extremes.
Personally I see the “cure” as an extreme such as I see the “acceptance as a different way of being” an extreme- when I consider the individual case of my son. There is not a different way of being when there has been more than 50 medical conditions detected on him- clinically and there is a true possibility of healing the detected medical conditions when the proper treatment of some aspects improve- sometimes dramatically- sensory aspects or behaviors “ assigned” to autism as characteristics under the DSMIV.
One thing is to accept that there are developmental differences related to what the ADS diagnosis implies- sensorially, emotionally, communicationally- and other to consider that there is no medical conditions concomitant to the ASD diagnosis and to consider that the behaviors are related to different brain wiring in advance. If I would have thought that way, my son would have several untreated medical problems-some of them potentially life-threatening. The fact that there is no consensuated protocol to properly test,detect, diagnose and treat them is another problem – because all the responsability to get the appropiate doctors and the needed help and to discriminate about what is serious or not is on our shoulders.
Now, there are individual, familiar and social aspects to consider. From the individuality, acceptance is the only way to begin the journey. Changes are needed in the way the familiar relationships are based and nurtured. My son´s challenges are accepted and accomodated by his parents and his sister. From the social and educational aspects, for sure there are several accomodations to do- and we do a lot of them to make the school pleasant for my son- and in parallel we treat the medical problems we have detected on him- and he also receives the OT and ST he needs. And for sure we need a more tolerant and inclusive society with the full respect for all disabled people.
More on the topic
http://www.autismspeaks.org/community/forums/showthread.php?t=2572
You may equilibrate both views for the most complete approach to the well being of an individual. In my son´s case, he needed both – and probably the acceptance word it means different for each family and for each individual- taking into account the individual autism.
CS
Apr 27, 2008 at 10:55 am
Maria,
I have followed your posts on various boards for at least a year and a half and you seem incapable of writing something short and to the point. I often wonder if your perserveration are these very long comments you leave whenever you write something. I wonder if others have noticed this about you as well. I’m not attacking you, but often some parents don’t seem to recognize certain autistic traits in themselves. I would be interested in your thoughts on this.
Kristina Chew, PhD
Apr 27, 2008 at 11:22 am
@María, I like the notion of “equilibrating” different viewpoints.
@kim, completely echo everything you write! Charlie has made everything better for us.
H6
Apr 27, 2008 at 11:49 am
Is a “curebie” someone who tries to get medical attention for as many as “50 medical conditions” in their child? That just seems like responsible parenting.
Is there a danger that someone who adopts the acceptance paradigm will not address the medical issues that the “curebies” address? The idea that someone ignores underlying medical issues in the name of acceptance seems tragic for all involved.
Is there agreement that there are a lot of other medical conditions associated with autism that need to be addressed?
Kristina Chew, PhD
Apr 27, 2008 at 11:53 am
@H6, Those are the different “sides,” indeed.
Daisy
Apr 27, 2008 at 12:05 pm
I lean toward the acceptance side, although I hope my child with Asperger’s will have a future in the Big Bad World where he’ll work with neurotypicals and people “like” him. He’ll have to learn socially acceptable behaviors in order to develop independence.
Another Voice
Apr 27, 2008 at 12:16 pm
In my opinion it is unfortunate that Ms. Fischkin choose to diminish an otherwise good post by adding sensationalism. Stating that autism is “an epidemic and in comparison it is making polio look like a sore throat.”, creates such a poor parallel that it detracts from the point of the post. Polio took the lives of several thousand children each year and damaged many more, thank God that in terms of severity autism is not even close.
Regarding acceptance, I have never viewed acceptance as the equivalent of surrender. Far too often I see references implying that acceptance means not doing anything. That is not the case in my view.
H6
Apr 27, 2008 at 12:25 pm
Following Maria’s link, I saw this thought-provoking post from “Andie”:
“He wasn’t autistic from birth and not only was he not autistic he was relatively healthy. Or so we thought- as I shared here before he had a slight telltale sign that he may have had an impaired immune system from birth. His umbilical cord would not detach in what is considered a normal time frame. After returning to the pediatricians office for several visits spanning 11 weeks the doctor commented how ‘odd’ it was and stated that is usually something you see in a child with immune dysfunction such as a child with HIV (which my son does not have).
It has been very difficult to find doctors who are willing to help and capable of helping. Most responses to whatever the medical ‘crisis’ was usually was met with -’that just happens to some kids with autism’. This has to change. We have to better understand what is going on with these ill children and how to help them- not blow them off and disregard their medical issues.”
http://www.autismspeaks.org/community/forums/showthread.php?t=2572
Maybe his post illuminates the danger of doctors themselves adopting an acceptance paradigm. Probably one has to be both a “curebie” and an “accepter” to do the best job in this situation.
It’s interesting that the similarity to AIDS in the post focused on HIV. It ignores the evidence that supports HHV-6 as either the prime AIDS cofactor
or the primary cause.
Right now immunological problems in a child would motivate a doctor to test for HIV rather than HHV-6. That might all change in the not too distant future.
http://www.hhv-6conference.com/
Given HHV-6’s role in AIDS, Chronic Fatigue Syndrome and autism (just to name a few related medical issues), we may see the rise of “HHV-6 curebies.”
A shift in the conventional wisdom about AIDS could caused an earthquake in many other medical problems.
Joseph
Apr 27, 2008 at 1:58 pm
Accepting autism doesn’t mean that you also accept medical conditions the child has. That’s a straw-man. If my son gets a fever tomorrow, I won’t ignore it based on my acceptance of autism. That would be absurd. Now, it’s up to each parent how they go about finding out if something is medically wrong, what type of professional to consult, etc. There are some approaches I would not agree with, but that’s a different debate.
Sarah
Apr 27, 2008 at 2:17 pm
I don’t think most people of the “acceptance” camp would criticize parents for trying to address medical problems which may or may not be related to ASD. The “acceptance” paradigm does and should not mean ignoring the well-being of autistic people, and I would vehemently oppose any pro-acceptance person in favor of this. However, I am a bit skeptical about including medical problems as “part of autism” when the science is inconclusive. Addressing medical problems is not “curing autism.” I always took “curing autism” to mean turning an autistic person into an NT, in terms of behavior and neurology. I oppose attempts to do that, but support different ways of improving quality of life for autistic people.
I definitely feel for what Maria is going through, and agree that “modern medicine” is oftentimes imperfect in detecting and treating medical problems. My sixteen-year old (NT) sister has received so many medical diagnoses during the past year and a half, though perhaps not as many as 50. (Many of her problems, BTW, are similar to those often thought to be associated with autism, though she is definitely not on the spectrum.) She’s already had one surgery and may well have at least one more. I know it’s a struggle for my parents to figure out what they should be doing when so many things are apparently going on at once, medically. My family’s experience has shown me that medicine can’t always offer easy answers and solutions. That’s very unfortunate, and shows the need for more research–actual research, not expensive quackery of the DAN! variety.
María Luján
Apr 27, 2008 at 2:49 pm
Hi
CS I in general consider that to exchange opinions about autism require the avoidance of generalizations and also the need of detailed explanation to avoid misunderstandings in a situation that is per se very confusing in terms of what are personal ideas on the issue.
I have written short posts on aspects that for me requires less explanation and long ones on others that I feel may generate a deep productive discussion. I understand that not everyone is interested about what it is my opinion, of course, and not necessarily my style of writing is enough clear or of some reader´s taste. Writing in a second language for me what is difficult to explain in spanish is not an excuse, but a real problem sometimes. I do not consider this you call perseveration as a problem; it is a matter of coherence, such as other posters present their points of view in a sustained way in time. To have a carefully personal reflexive position implies many times also the defense of this because you think that is the right thing to do. About having autistic traits myself I have no problems about. My way of thinking is very alike many autistics adults presented in terms of how attention, hyperfocus, etc are experimented.
H6, Sarah thank you for your comments.
Joseph, you are right IMO when you mention parents responsability on the aspects cited related to CMPs .
Kristina Chew, PhD
Apr 27, 2008 at 3:03 pm
Following up on what Another Voice said—-there’s a tendency to think that “acceptance” means “giving up,” “giving in,” “surrender,” “not doing anything”; in many ways, “acceptance” can be (is) very active and really requires a change in one’s thinking.
María Luján
Apr 27, 2008 at 3:24 pm
Hi Kristina
I agree with you that sometimes this is the meaning or the understanding of . But also there are communication problems related to what autism is, IMO when these words are uses (Acceptance, cure ). There are a lot of work related to the word acceptance - such as I see it as the mom of an autistic child-if a true activism by and for his human rights ( all levels). The acceptance implies for me also the medical aspects that I included, in a very very very long list.
María Luján
Apr 27, 2008 at 3:26 pm
Sorry, a typo:
There are a lot of work related to the word acceptance - such as I see it as the mom of an autistic child-IN a true activism by and for his human rights ( all levels).
H6
Apr 27, 2008 at 3:29 pm
Maria,
I wouldn’t worry too much about your ability to express yourself. Your points, your honesty and your intelligence are coming through loud and clear.
Maybe a little too loud and clear for some. Thanks for making an effort to tell your story.
Are the “50 medical conditions” you mention ones that have been associated with autism in the autism literature? Are any of them ones we have probably not heard of as being associated with autism?
mayfly
Apr 27, 2008 at 5:00 pm
If one has a disabled child should one do all one can to mitigate that disability? If that intervention leads to the loss of that disability has one harmed that child?
The situation is murky because of all the false assertions about heavy metal poisoning and the like which has created an entire industry based on false promises. One needs to set that a side.
The question is not whether one should pursue everytng purported to mitigate autism, but whether one should pursue things which are backed up by evidence which withstands scrutiny.
Even then one has to look at a child’s response. For intstance
adrenaline salts, SSRI’s, dopamine antagonists, anti-convulsants, even blood pressure medicine have all been reported as successfully controlling some of the violent manifestations of autism and by calming the child better enable it to function. However one would not give all these drugs to a child. We give clonadine a blood pressure medicine, and risperdal (a dopamine antagonist) to our daughter. We believe these drugs better enable her to function. They help to mitigate her hyperactivity and violent outbursts and help her get a good night’s sleep.
Is it loving to just accept a child who throws things, turns over remarkably heavy pieces of furniture, lives on two hours of sleep, physically attacks people
or does one take steps to change these behaviors.
In truth I don’t really know whether it is or was the drugs, we tried various combinations until we came upon a somewhat successful combination, our constantly reaching out to her in love, or her maturity which has given us the happy child we have today.
There seems to be a compact among those pressing for total acceptance that the list of antisocial behaviors listed above should never be mentioned.
Another thing that cannot be mentioned is what autism is named for…the withdrawl of a child from the world and into itself. Is it loving to do nothing here, to accept this, or is it loving to try to bring the child out. I say it is loving to try to bring the child out? There are those who fail to acknowledge such a condition even exits. ABA has the best track record here. While, I my daughter did not make great strides of the Maurice children, I believe ABA helped her to breakout of the autism imposed isolationism. I obviously don’t think it would be loving to have left her there.
No parent fully accepts all the manifestation of autism, to so would take an indifference indicative of an extremely small heart.
Then there are the financial sacrifices one makes to get our children into school districts with better programs. When I saw that my daughter’s previous school district was going to give up on her, we moved. My daughter’s schooling has three goals, the first is to teach her lifeskills, the second is to help her to communicate and learn social skills, and the third is academics. For my daughter it is more important to learn how to take care of herself than it is too know how long it takes light from the sun to reach the earth.
The social skills portion where she is teamed up with an NT partner has two goals. The NT partner gets to know a seriously disabled child and the child learns how to better relate. Indeed this is true all day in school, at her Sunday school class, at camp, at E-soccer, etc. My daughter has no friends, nor does she show any interest in them. However she has made fantastic advances in how she relates to us. We did not accept her complete lack of social interactions, i.e we did not accept that aspect of her autism. It would not have been loving to have accepted her wanting to have no relationships. We are lucky in that what we have done has not put undue stress on our finances, stress yes, but not anything we cannot handle by giving up the nice-to-haves, not the necessities. There are those who take on a great deal of debt to give their autistic children a better education.
My daughter has made huge strides, and she is still severely autistic, she is still severely disabled. Some of her worse behaviors have all but vanished, some come and go with fair regularity. But their “duty cycle” has become less and less.
The line between neural-typical and autistic is not stark, but does exist. It seems for many it is okay to take measures to move your child toward the NT side of the line, but to cross it, or even to hope to cross it is immoral. I disagree strongly with that, To want to help someone conquer their disability
is an act of love not hatred.
Does this mean that children should be subject to schemes which are dangerous? Of course not! Does this mean that children should be used as guinea pigs for some alternative medical practice with no studies to back its claims of efficacy? Of course not? Does this mean one should be obsessed with curing your child? I know people like this who spend every cent they have, trying every rumored treatment. Once one enters that world cure becomes an obsession. The child’s safety is in danger of being sacrificed for the rumored possibility of a cure.
There are some people who come off the spectrum. Perhaps some are misdiagnosed, but strangely at an early diagnosis, a child who meets all the criteria of DSM-IV is more likely to come off than one who does not. The thought is that the child with the fewer symptoms never reached that level of development. There are children who come off the spectrum due to early intervention programs and ABA. Cure is not impossible, but it is rare.
In the end one accepts the odds of moving a child into the NT world are very small. Again the goal is to move the child as close to that world as possible. Some people refer to this as giving thwe child skills. That’s fine by me. The child is still getting the help it needs.
There are people who believe cure the child at any cost, and those who want to prevent any research into cures. Both are amazing consistent, in being able to see nothing beyond their child’s autism. The cure at any cost people believe unless the autism is totally eliminated the child is soulless. The no cure at any cost people believe if medically safe cure were to be discovered to give it to a child would leave that child soulless. I’m not using soul here in any religious sense.
I’m for a cure, but I don’t expect one. I don’t pursue any of the alternative medical remedies. We simply provide a loving home for her. She is a very happy child, but as to her future, I would rather her living a full active life than to need institutional care. However if that’s what she needs, I want those institutions to be staffed skilled caring staff members.
I’ll be glad to discuss this with anyone, who is capable of responding in a civilized manner. I won’t respond to any hateful screeds.
Melody
Apr 27, 2008 at 6:00 pm
I think it’s important for people reading to understand that accepting autism doesn’t mean ignoring medical conditions or not helping autistic people learn new skills. I am autistic, a self-advocate who accepts myself and my parents accept too, but I still sought medical attention for things like seizures and strep throat, and am in speech therapy (though what has passed as speech in the last few years hasn’t really helped me at all). I would like to learn new skills, but that doesn’t mean I’m trying to become non-autistic.
stopautismquackery
Apr 27, 2008 at 10:55 pm
As someone who has lengthy personal experience with both HHV-6 and ASDs, I agree with Joseph that this is a straw-man argument being put forth by some commenters. I see this same straw-man raised at least a few times a year, btw. It’s getting old, several years into it now.
Kristina Chew, PhD
Apr 27, 2008 at 11:36 pm
Perhaps it’s that, however it is put in words, parents “accept” their child as an individual having numerous differences—-how the child acquired those differences and how they are understood on a daily basis are where views converge. I cited Marino’s and Fischkin’s pieces because there seems to be more acceptance and understanding of the “difference” of autism expressed in their writing, than they might seem to directly address.
H6
Apr 27, 2008 at 11:40 pm
HHV-6 does what it does. Whether you heard about it ten years ago or today or ten years from now.
C. S. Wyatt
Apr 28, 2008 at 12:58 am
I do not know if I am the rare HFA to post here or not, but I do know several things about me that might not apply to every ASD individual — but are definitely not what parents want to hear.
1) When I am non-linguistic (I make sounds) and detached, I am not thinking in any way that could be converted to “higher level” cognition. I’m thinking, “I want my pencil. My favorite pencil. I want it now.” I can spend hours contemplating soft cloth, the rough feel of Velcro, or anything else that enters my mind. I rock and think… I don’t ponder great political leaders or even what it means to be autistic.
2) My parents took me to physical therapy, and I was last at an occupational therapist in 2006, at the age of 38. It helps me deal with motor skills. It’s not curing me — it’s giving me ways to adapt. In other words, my parents didn’t seek to change me, but to give me techniques for survival.
3) I have other medical conditions apart from my neurology. I think every parent does what they can to deal with the unexpected. Treating those situations can and does reduce my stress, which might “seemingly” reduce my ASD traits. As my wife notes: stress leads to the worst HFA traits being uncontrollable / unmanageable. Being in pain is stressful.
My deepest thoughts on some days are whether or not one can exist on Pop-Tarts and chocolate. I don’t always like most foods, but somehow Pop-Tarts are a miracle of calories.
Seriously. I have gone entire weeks without a serious, academic thought. That’s why I work ahead when I can… just in case.
stopautismquackery
Apr 28, 2008 at 2:28 am
@H6
Do you have HHV-6?
stopautismquackery
Apr 28, 2008 at 2:42 am
“HHV-6 does what it does. Whether you heard about it ten years ago or today or ten years from now.”
H6, the straw-man was in reference to the weary-worn argument that some groups put forth about others claiming they don’t treat medical illnesses — which couldn’t be further from the truth. I really quite don’t understand the meaning of your words above.
mayfly
Apr 28, 2008 at 9:20 am
@Melody, I don’t think anyone has tried to make the point that people on the acceptance side of th argument are in favor of ignoring medical conditions.
Autism is defined by a list of symptoms. If one chooses to take action to one of those symptoms via a drug, a teaching method, or just assuring the child it is welcome, then one has not fully embraced their child’s autism as they chose to change one of its manifestations.
I see it this way. I am a flawed person as is my wife. We both know that and we both try to improve in these problem areas, but both of us know that we will be loved by other should we fail. I don’t spend my days thinking of my wife’s flaws. I’m more concerned with my own.
We love each other despite our imperfections.
My child has a disabling disorder called autism. It has manifested itself in her quite differently than it has in some. Just as I don’t dwell on my wife’s flaws, I don’t dwell on my daughter’s disabilities. She would be better off in life if her disabilities were eliminated. However that does not mean she is not loved/accepted as she is. Just as my wife loves, accepts me as I am.
Now it could be argued that autism is like a person’s height. There’s nothing which can be done about it. If I or my wife thought that my shortcomings had to do with my being shorter or taller than average, it does no one good because I cannot change that. My height is fixed.
One can view the autism in the same way. However height passed a certain age is fixed. How autism manifests itself is not.
Marla
Apr 28, 2008 at 5:46 pm
We went through phases. At first we wanted to cure our daughter and then eventually we gained acceptance. I don’t think about a cure anymore. I don’t believe there is one. I like this post. It is very thought provoking.
The Open Wallet Policy
Apr 29, 2008 at 11:11 am
[…] Sunday I wrote about hope starting with acceptance and asked: Does one strive to do everything one can to cure, heal, recover a child from autism with […]
Regan
May 9, 2008 at 2:48 am
Someone sent me this short audio essay on adaptation. I thought some might appreciate it.
From NPR’s “This I believe”
http://tinyurl.com/5a7n2p
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