Judging from my Facebook news feed and all the mindless shares that I get (and seriously appreciate. Mindlessness does the body good sometimes), lists are where it’s at. Every day I see links to things like “Ten Ways to Tell You’re a Wine-a-Holic” (I didn’t need to even look at that list . . . I am) to “Nine Things I’ve Learned from a Hippie.” We are all apparently too busy or lazy to read articles and must have all the significant information disseminated via bullet points.
So, I’ve decided to make a nice, handy, convenient list of things that I feel are important for people to understand about autism parents, and parents of special needs in general, and parents of those who have been extensively injured by their environment or diet (vaccines, antibiotics, anesthesia, food and water, etc.). I’ll call this “Eleven Things We Don’t Want” simply because our list of wants would be epic in length.
Enjoy.
1. We don’t want your sympathy. While we may be prone to over-sharing about our struggles, and we absolutely have our woe-is-me days (which can potentially turn into dark weeks if left unchecked), the 
last thing most of us want to hear is “poor you,” or even “poor baby,” or “I don’t know how you do it.” Instead, use words of encouragement or understanding. Or, better yet, bring coffee and wine and use those words in person.
2. We don’t want different children. Although we fight against the symptoms known as autism every day, it is not because we don’t like our children the way they are. It’s because within them exists a beast like no other – one that prevents them from experiencing joy most days and creates great emotional and physical pain. We want a different set of circumstances, certainly. But that’s not to say that we don’t accept and love our children.
3. We don’t want “normal” children. I don’t long for a child who conforms to society’s idea of what is normal or typical. I love that my daughter has spunk, energy, and her own unique grooves. Never would I wish those away because they are a part of her true personality. Autism is NOT her true personality. Autism robs her of her true personality, the one that existed up until her first birthday, the one that I have seen glimpses of here and there since we began treatment. I want that daughter back, quirks and all.
4. We don’t want handouts. When we speak of holding companies and people responsible for the pain they inflict on families and children, we do not do so because we want to profit from our circumstances. My family is interested in pursuing a claim through the Vaccine Injury Compensation Program (“Vaccine Court”), but it isn’t because we dream of living in the lap of luxury. All we would ever want is for our daughter’s treatment, the services made necessary by the damage done in part by vaccines, to be covered. This treatment has created a great financial crisis for us and will continue to do so. Victims of Vioxx side effects have been given an avenue to fight for and rectify their situation and, for some reason, they don’t get the side-eye when they talk about it publicly.
5. We don’t want to give up. Many of us have learned to love the fight, but that’s simply because we have little choice in the matter. It’s the fact that we HAVE to fight that infuriates us. As with any parent, our job is to help our children, heal our children, love our children, and give them a chance at a happy future. Our lives are only unique in the fact that insurance companies, doctors, pharmacies, schools, and other entities which were created to support us do the opposite. We soldier on and fight the good fight, for our children and others’.
6. We don’t want to trample on your rights. In fact, most autism parents I know become more and more libertarian each day. We want to protect everyone’s personal rights – to informed consent, to choice in healthcare, etc. Our ability to exercise these freedoms is central to our children’s well-being.
7. We don’t want a “nanny state.” Just because we promote transparency in government proceedings, truth in labeling, and genuine informed consent at the doctor’s office doesn’t mean we want to be hand-held through life. These things are basic expectations, not ridiculous mandates. We shouldn’t have to jump through elaborate hoops to find out what’s in our food.
8. We don’t want to transform everyone into a tree hugger. While we do often talk about such things as the wonders of coconut oil, growing your own food, and holistic medicine, it’s not due to some sneaky plan to take away your SUV and replace it with a Prius. I don’t care what you drive or what you eat or what you take, but I’ll die fighting to educate people about their choices, because I know what it’s like to live with the negative consequences of misinformation and lack of knowledge.
9. We don’t want to label every kid as “autistic.” But please understand that the common maladies that plague our children these days (asthma, food allergies, ADD/ADHD, psychosocial disorders, diabetes, even cancer) have all been created by the same system. Personally, I don’t care if your child has a formal diagnosis of anything or if you’ve decided on your own to call things as you see them. I just want your child better, and I want future generations to not have to endure these things.
10. We don’t want to do away with modern medicine. My daughter has benefited from things like X-rays, CT scans, sedated exams, trips to the 
ER. They have uncovered new things for us to treat, new avenues toward healing, and for that I truly appreciate modern medicine. She sees countless “mainstream” specialists who dispense a variety of non-holistic remedies. I pick and choose, based on my own gut feelings and research, how to approach each disorder or ailment with the input of these doctors and our naturopathic doctor. We know doctors and hospitals exist for good reason . . . we just recognize what the real reasons are and don’t put all our eggs in one pharmaceutical basket.
11. We don’t want to be hailed as geniuses or know-it-alls. We share data, research, articles, and stories because we wish others had done the same for us. We also do it to let others know they aren’t alone out there, that they have support and that they aren’t as crazy as disbelievers would have them believe.
So, there you have it. A simple guide to knowing and understanding an autism parent. We aren’t as frightening or needy or mysterious or complicated as you might have feared. But, whenever in doubt, simply bring wine.
~ Lone Star
Lone Star is a long, not-so-tall Texan with brass balls and a strong will. It’s true about everything being bigger in Texas, including her attitude and her heart.
I would like to state that it would be nearly impossible to represent everyone in an article without it being infinitely long or extremely vague. (For those who mention it doesn’t represent them or everyone).
Now, in terms of vaccines, Idk about the vaccine used, but I do know of a vaccine that can have a more permanent effect if used incorrectly: rabies vaccines. IF it is done again within a certain amount of time, it can cause a swelling of the brain, at least in animals. It doesn’t necessarily kill them, but it does have a mental affect.
In order to cause autism after birth, something like that would probably be required. However, it is also possible that certain substances react with certain genes, which could cause a physical mental change. Also, babies are far smaller and more “malleable,” for lack of a better word, as they are still developing majorly.
It is important to consider that mental conditions aren’t always evident until 2-3 years old, after a certain point in development (and because kids start talking, because they or don’t). Although, I have seen articles (yet to read them) mentioning that you can possibly “detect autism in the eyes of your baby,” by how they look at things or something.
And, as a disclaimer, I’m not trying to offend anyone, just analyzing the situation and trying to help. I’m also not 100% sure of anything here. I’m not 100% sure of anything, as a general rule. Also, this is informal speech grammar, not real grammar, I’m aware. 😛
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So much for a single, small-paragraph post.
Yes, “mental conditions” aren’t always evident until 2-3 years old, but many people report having known that their children were “different” from the time they were born. Those children probably had the condition (or some form of it) from birth. But there are many others who have pictures and videos of children who were developing “normally” and then suddenly or not-so-suddenly weren’t. Those children were not born with the condition. Something happened. Frequently, that “something” involves vaccine reactions that include all the signs of ecephalopathy or encephalitis, and, yes, swelling of the brain is often a feature. Many parents report that their children’s heads went from something like the 15th percentile in size to the 85th in a matter of a couple of months. That is NOT “normal,” but unfortunately, it is becoming more “common.”
I really enjoyed your article. It is too bad that so many people can’t take what is beneficial to them about an article and leave the rest without gripping about it. It seems like most of those who commented are obsessed with the few statements that don’t apply to THEIR situation as if you are not allowed to write from your own experience. They must have forgotten…it is YOUR blog! I have a child with special needs from a brain injury and she was never vaccinated, so much of your article didn’t speak to my specific situation, but I didn’t expect it too. The many points that rang true for me and even brought a tear to my eye, made it well worth the read. Thank you for doing what you do and for having the thick skin to deal with all these crazy self-absorbed people who leave nasty comments. I don’t understand it, but stay strong!
I was disappointed to find this article focused so much on vaccines. My daughter was diagnosed autistic at 2 and we didn’t vaccinate due to other reasons, so her autism most definitely was not caused by vaccines. It is just who she and always been. I was hoping for more than a sermon when I read this article. I for one am tired of blanket articles about what people want. Don’t lump us all in one group. No two autistic children are the same and no two autism parents are the same. While some of you points were on target some were so far from how I feel that I hope my family and friends don’t read this article and assume I feel how you do.
Sorry but I couldn’t make it past the vaccine debacle. It was great up until then. I don’t know about all of you but my son was born with autism. There wasn’t some drug that was responsible for it. My mother smoked 2 packs a day while pregnant with me and I’m in great health. Always have been. Isn’t it time to put this ridiculous vaccine crap to bed?? I would rather him be autistic then have the face the consequences of a devastating illness.
Excuse me, Rachel, but how utterly rude to assume that because YOUR child was born with autism that everyone else’s was as well. YOUR mother smoked two packs a day and you are in great health, does that mean that it’s a smart thing for an expectant woman to do? I defy you to read the science and say that that’s true. Just as SOME smokers who smoke two packs a day don’t develop lung cancer, possibly including your mother, but the rate of lung cancer is SO MUCH higher in the population who does that it is clear to all concerned that smoking CAUSES lung cancer whether or not it did in your mother. Just as vaccines are causing autism, whether or not they did in your son.
Even if my child had been born with autism (she clearly was NOT), I would never deny what has been echoed by thousands upon thousands of parents. You have no standing to question the antecedent involved in my child’s autism. You are neither her parent nor one of her many health care practitioners.
Her autism isn’t a quirk. It has, in fact, been a series of devastating illnesses and she will likely need some level of medical intervention for the rest of her life.
Well put. And thank you.
Thank you!!!!!!
I thought I should read this based on the title “11 Things Special-Needs Parents DON’T Want (And Why Bringing Wine Helps)”, but I was wrong. I did eventually finish the article, but I had to come back three times- Special Needs child is a broad term that includes 100’s of diagnosis not just Autism or children on the spectrum. As a mom of 4 yo with multiple severe diagnosis, not including autism, it is disheartening to read yet another article that does not address all disability.
I also have been and continue to be disheartened by anyone who claims that they would not like their child to grow up and be able to take care of themselves. I have evaluated my heart over and over- it is only natural to have a child to grow to be a functioning adult, but that does not mean I don’t want my dd, but I would want her to function “normally” in a heartbeat, especially when she looks into your eyes trapped wanting to move and speak out…
oh and there are so many issues with this article…
bring wine was to much for most of our family or friends. we found out quickly that most people including people in churches etc can’t handle a special needs child- and I would like to say to them- grow balls, grow up and face real life reality- life isn’t about getting your nails done a new cell phone, atv, gun or wine- our shit just got real.
When you become a 24 hour a day 7 days a week nurse, for an indefinite amount of time, house bound most of the time, perfecting medical procedures, fighting for life sustaining medical supplies and being told because your child is a dnr you can not ever qualify for more nursing hours- life is real!!!
medicine has nothing to offer, and holistic is working slowly but surely. it is expensive and never covered by insurance and government programs are a joke!
I’m sorry that this article hit a bad note for you, but I would like to clarify. I absolutely want my daughter to be able to care for herself, advocate for herself, and succeed in every respect. That’s why I fight so hard every day. What I don’t care about is her ability to “fit in” with everyone. I love her true quirks, but I don’t love her behavioral manifestations of internal pain.
While the post was meant to apply to the special needs parents I know – who are dealing with numerous disabilities aside from or in addition to autism – I can obviously not pretend to represent everyone. My daughter has several different disabilities, some of which are related to autism and some that are not.
Most of all, I am sorry to hear that you have not been supported in your community. What we all need is to be able to relate with and rely upon others because we certainly can’t do everything all the time. I hope that you are able to find some kind of support group in your area or even online.
Pain is worth curing, whether it’s physical or emotional.
Who can reach their full potential if their feces spills out uncontrolled?
Or backs up into grapefruit-sized balls?
That’s where the word “cure” comes in — it’s palliative care, not psychological redesign.
It takes research, effort, time and money and is not taken lightly by parents.
The convenient fictions created by people who aren’t even onlookers to autism never ceases to amaze and offend me.
I want a healthy child, not a new kid or a “normal” kid. I want a child who can absorb nutrients, speak, control her bowels, resist the urge to wander away from safety, doesn’t smack and scratch herself, doesn’t suffer from seizures. Every parent of a child with health problems wants those problems solved; special needs parents who address underlying medical conditions are no different than parents who seek an oncologist’s care when their child has cancer.
We don’t want different children. We don’t want “normal” children.
2 and 3 would be a lot more convincing if you guys weren’t trying to ‘cure’ your children all the time. If there’s nothing wrong with the kid, why not let them be? But you do want normal kids, even if you won’t say so, and therefore you and your friends drag ’em all over creation for the next shiny treatment and end up convincing the kids you don’t love them. I’m not a parent, but ‘I love you, now change’ seems contradictory.
If you WERE a parent, wouldn’t you want the best life possible for your child? If you watched your happy, healthy toddler suddenly change into one who did nothing but line up cars and twirl his fingers, when he wasn’t banging his head against the floor or having a screaming tantrum because he can’t explain what hurts, would you honestly think it’s “loving” to leave that child in that state without trying to do what you can to improve conditions for your child? If so, then I suppose it must be equally as “loving” to accept your child’s cancer or Lyme disease or congenital heart condition without trying to “change” it. A loving parent wants good health for their children. It’s not at all contradictory.
good reply TMR!!!!!
It always astounds me that there are people out there who think that vaccine-induced brain damage/autoimmune disorders/severe intestinal disorders are things that parents should ignore as part of “accepting” and “loving” their children.
Perhaps these people would also urge parents of children with asthma or diabetes to accept their children as is?
Are they really so afraid to admit that vaccines have already been proven to cause or trigger such issues? What on earth drives them to such fear? Influenza? HPV? Chicken Pox? Rotavirus? Hepatitis B? Hepatitis A? None of those vaccines were ever given when we were children, but it just smacks of panic, the way these people frantically scurry like rats to get “their” flu shots when, in reality, they have something like a 3% chance of getting real, lab-confirmed influenza even without vaccination.
Really? This again? If you’re really a “Researcher”, go spend more time in real science. Learn more about herd immunity. Learn more about the historical data of deaths from the flu and measles. Learn why it’s easier to control the spread of a disease with vaccination than to wait to treat people that could die and risk further spread to health care workers. Remember that kids in school come in contact with a lot of people every day that are not flawless hand washers. Learn about how disease transmission rates change as population densities go up. Go back and learn about Polio and how people were afraid of things we take for granted now like swimming pools. Now, my kids have Aspergers, which perhaps is different, (and maybe it’s not different enough to matter) but we can show family history for generations of people that were just “weird”. That is their personality, it wasn’t taken away from them. Those differences that I have, the differences that my spouse and children have, are who we are. Sure, we may have higher incidences of stomach/intestinal issues, and as we learn more about the science of the gut microbiome perhaps we will learn things that help with that. But, it may well take the deep analysis skills of autistic thinkers to crack some of these problems.
Asperger Dad, it IS different. YOU can trace back “weirdness” in your family for generations, but that is NOT true of the families of many people with autism. You probably are among the people for whom the genetic component is more significant (and I have heard this MUCH more often in families with children who have Asperger’s than in children with “classic autism” or “severe autism” or “regressive autism). By the way, the latest science on the microbiome (since you do have stomach/intestinal issues) makes it clear that it has a tremendous effect on things that have been generally considered to lie in the “mental health” arena. So perhaps, even the “weirdness” in your family for generations is due to altered gut bacteria going back a ways.
Funny you should mention “herd immunity,” as that was a concept based upon populations that had immunity naturally do to exposure to wild measles. It was an epidemiological construct to explain the observation that populations that already have a high number of people who have been exposed to a particular disease do not have outbreaks of the disease. It was assumed to be broadly applicable to vaccine-induced immunity, but it turns out that vaccine-induced immunity is a different animal from naturally induced immunity. Why does that matter? Well, trying to achieve “herd immunity” with vaccines is proving much more difficult than theorized, because vaccine-induced immunity wears off and booster doses wear off more quickly than the originals. Which means, at no time do we really know what percentage of a population has immunity to any particular disease. In addition, the susceptible population is distributed rather differently than it was with natural immunity. The susceptible population gets older.
And the history of polio? Way more complicated than your comment or this comment can take on, but you should check out the book The Virus and the Vaccine, and read some on the reasons why polio which was a relatively benign infection in the vast majority of people who get it, suddenly became more virulent in the first half of the 20th century. WHY was polio suddenly able to work its way into the nervous systems of so many more people? Currently, there is a huge drive to give the oral polio vaccine in India. And success has been announced. Polio has been eliminated in India! Though if you check WHO statistics you will see that NON-polio acute flaccid paralysis numbers have gone up in rates comparable to the drop in POLIO acute flaccid paralysis rates. I’m not sure if the people who are getting the “acute flaccid paralysis” really care whether it’s called “polio” or not. Just like the kids who are getting “reactions” to their measles shots 8 days afterward that look and act just like measles don’t care if it is called “measles” or not.
Not a parent? Never had your child DIE or require every ounce of your energy & patience? Come back & give us advice when you’ve experienced, endured, worried, cried, prayed & lived in these circumstances! Until THEN, please zip it!
Well said, Lone Star 🙂 Thank you!
This is wonderful. Applies to activists with healed/NT kids as well.
Awesome article! Thanks so much for sharing this!!!!
DITTO!!
Bravo!