A Year's Worth of "Please Don't Say That"

Please, Don't Say That - A Year's Worth of Questions and Comments That Never Go Away

• “She still isn't talking?”

~No. She’s not. There is a chance that she may never really talk enough to carry out full conversations, but she’s made tremendous progress in her speech classes.

• “I watched that Temple Grandin movie, I get it.”

~No. When you've met/seen one autistic person, you've met/seen ONE autistic person.

• “Why do you let her do that?”

~To say that I let her do anything feels insulting whether or not the person means it to be. There are many things Bella does that we’re not sure that even she has much control over.

• “I bet she could do _________ if she really wanted to.”

~My daughter has made amazing progress over the last year and I know quite certain that she strives everyday to push forward. There are also things I know that she wants to do that she just can’t, yet.

• “She won’t look at me when I talk to her, that’s pretty rude.”

~ Says the total stranger. I know many typical kids that don’t like to talk or make eye contact with complete strangers.

• “She’ll grow out of it, she’s just stubborn.”
  “She just needs a good spanking!”

~In my opinion and experience, spanking does nothing to reinforce positive behavior. Autistic or not, when people say this to us, they usually don’t have their own kids, thankfully.

• “You’re not trying hard enough to get her to do _______.”

~Please. Most of our days are dedicated to helping our daughter gain new skills and keep from regressing from skills she’s picked up on. To have someone say this feels like a slap in the face.

• “At least she can _______.”

~Yes, we are very thankful that our daughter can do the things she can do but at the same time we mourn the simple things that she can’t. Like talk.

• “Jenny McCarthy cured her kid. Why don’t you just do that?”

~I think I've made my opinions on this woman pretty clear for the most part. Her son never had autism. What she did to help him is great, but it's not effective for autistic children. Not only that, but she’s personally made millions of parents terrified to vaccinate their kids against deadly diseases and illnesses. In my opinion she’s done more harm than good for vaccinations and autism.

• “Why do you take her out if she might have a meltdown?”

~Why do you take your child with you if there is a chance they might cry or holler for something while you’re at the store? Why do you take your kid to the park if there is chance they might fall and get hurt? There is no real difference here. She’s our child. She goes where we go.

• “She looked me in the eye. She can’t have autism.”

~ We've worked for nearly a year on Bella’s issues with eye contact and there are many times when she still doesn't do it. If Bella makes eye contact with you, you should consider that a great compliment. It’s most likely because she finds your facial features symmetrical and pleasing. She actually loves to study faces, but when you start to talk to her, she’ll turn away.

• “It’s not that hard, just ____________.”

~Said, most of the time, by parents who do NOT have a child with autism.

• “I can’t believe you had more kids!”

~People think that the risk of having more than one child with autism is extremely high and very likely when in fact, there is only about a 5% chance subsequent siblings will be effected.

• “She’s not potty trained yet?”

~People usually ask this question when they see that she’s wearing a diaper. If she is wearing a diaper, then clearly, she’s not potty trained yet. Like most other things, we're working on it and it's a slow and tedious process. She's up to ten full seconds on the potty and that, to us, is great progress. 

• “You need to put her on some medication!”

~It’s been suggested to us by doctors, family, friends and even one of her therapist, that we put Bella on medication. We just don’t feel comfortable with doing that. She’s only 2 1/2. We don’t know what putting her on any medications are going to do to her and the only way we’d feel totally comfortable doing it is when she gets older and we can tell between her age appropriate behaviors and the behaviors that are triggered by her autism.

• “Are you sure she has autism?”

~Bella has had 27 different evaluations. She’s been monitored by three neurologists, two speech therapists, a physical therapist and an occupational therapist. She’s under the care of a regular care doctor, a pediatric psychologist and a pediatric behaviorist. So, yes. We’re sure.

• “At least you get special treatment everywhere you go.”

~I’m not sure where this assumption started but I wish that it would die. People are under the impression that because Bella has autism, we somehow get special treatment. In reality, most people in public don’t know. We don’t get red carpet and free samples, we get dirty looks, snide comments and a few times we've been asked to leave the store because Bella was crying. Trust me, it’s pretty much the opposite of special treatment.

• “You made up the autism to get attention.”

~Yes, a “family” member accused us of this and all I can say in response is that autism isn't something that I, as a parent, could fake. It would be the child having to fake it and I’m pretty sure an 18 month old can’t fake something like that.

• “What a brat!”
• “She’s just spoiled.”

~Two things that we've heard from family and strangers alike. Granted since family has learned more, they understand much better but strangers who say this are usually insulted that she doesn't respond to their waves of hello. Hint: most kids don’t like strangers anyway.

• “God doesn't give us more than we can handle.”

~I’m not a religious person and I understand the sentiment behind this saying and in order to not offend anyone, I’m going to keep my opinion on this to myself, for now. All I will say is that sometimes it IS more than I can handle. Even if Bella was an only child, there are days that get really bad.

• “Make her come give me a hug/kiss.”

~ We've dealt a lot with family members telling us to make her give them a hug or a kiss and the fact of the matter is, we can’t. She’s not doing it to be mean and trust me, a 2 year old isn't  going to hurt your feelings on purpose, but we aren't going to force her to do something that makes her uncomfortable. Again, in the defense of family, over time, they've learned more about how autism effects her and have come to understand her behavior a lot better.

• “You need to learn to control your kid better.”

~Yes, stranger in the supermarket who’s kid is running through the aisles, yelling at the top of their lungs and knocking packages of toilet paper from the shelves… I need to control my kid who’s sitting a cart, crying because she’s anxious and overstimulated.

• “Don’t cater to her, when she’s hungry enough she’ll eat what you give her!”

~While this might be true for most kids, for Bella it isn't  When Bella refuses to eat, we have to try our best to find something that she will eat. Her vitamin supplements can only do so much. If we left a plate of food in front of her that she doesn't like, the food would give in before she does. It’s not a stubbornness issue, it’s a texture and sensory issue. The way the food feels will literally make her sick.

• “She’ll get tired of screaming and fall asleep eventually.”

~You’d think so, but no. After a lot of trial and error, the only thing that really helps Bella sleep (and stay asleep), is a combination of melatonin and deep body pressure before bedtime. Like the food issue, if we don’t intervene, she’d never go to sleep. Granted I guess after a day or two of not sleeping, she’d pass out from sheer exhaustion, but we’d never want her to get that bad.

• “Is that her actual diagnosis or something you came up with?”

~I always thought this meant, “did you get her evaluated” until one lady accused us of “giving her the diagnosis” ourselves and just kind of going with it. It took a year on a wait list, but Bella has an official diagnosis.

• “…but she’s so pretty.”

~While I appropriate and agree that my daughter is very pretty, I never understand why this is the ‘go-to’ thing to say when people find out that she has autism. It’s like they can’t believe she’s pretty because she’s autistic? Or do they say it to make us feel better, like, “Oh, well at least she’s pretty.” I don’t know.

• “I feel so sorry for you.”

~Please don’t. There are families going through much more hardship than we are. We have a beautiful child who’s happy, healthy (for the most part) and kind. There are people out there everyday struggling to have a child or struggling with a much more devastating illness in their kid. We've learned to live our lives a little differently than others, that’s all.

• “How do you do this everyday?”

~We do what any parent does. We get up everyday with our children’s best interest in mind. We do what we have to do to make sure they stay safe, healthy and happy. We raise our kids and love them unconditionally.

• “Do you get jealous of people with normal kids?”

~There are times when we mourn the child we thought Bella would be, but we’re not jealous of other people or their kids. We have other children and we love them too.

• “Just take the bottle away, she’s too old for that!”
• “I cant’ believe you still let her (drink from bottle/sleep with a blanky)”
• “It’s because she’s a middle child.”

~Most children have a comfort item. We find nothing wrong with that at all. Sometimes I think that people focus too much on the autism and forget that she’s still only a 2 year old. The comfort items will go eventually and for right now, if they help her feel safe and comfortable, what’s the harm?

• “Did you breastfeed? Formula is poison!”
• “Did you bond well when she was born?”

~I breastfed Bella for a few months. She did use formula, not rat poison. As with all my kids, we bonded very well when she was born. Then again, both of these questions are irrelevant considering millions of babies are fed formula and a mere fraction of them develop issues like autism.

• “She doesn't seem retarded.”

~That’s because she’s not. Another widely spread misconception regarding autism is that it’s the same as Down’s Syndrome. While a lot of children with Down’s Syndrome have a form of autism, the same isn't said about children with an ASD. Autism is also NOT a mental illness like some want to think. Autism is a neurological disorder.

• “It’s just a phase.”

~No it’s not.

• “Did you read the latest on how to cure autism?”

~ I've read all of them and even though the prospect of finding a cure is alluring, none of the published “cures” have been proven to actually work. While some treatment options may help some kids, not all children with autism are the same or react the same way to the same treatments. As of right now, there is no cure, even though there are many, many doctors, pharma companies and researchers that would love to take your money and sell you unproven promises. Right now, the best, most effective way to help a child with autism is an early evaluation, therapy and hard work to help them improve. It's not a quick fix like some want, but it is proven to help. 

• “Are you sure it’s not your fault?”

~Having this asked to you after spending months and month working through issues of guilt is like having a hot poker shoved into your eye. It took me a very long time to stop blaming myself and to stop coming up with ways on how it could be my fault. Am I sure that it’s not? No. I only say that because I don’t know WHAT the actual cause is and until I do, anything is possible. I am pretty sure that nothing I did caused my daughter’s autism and I've finally stopped blaming myself for it, but there will always be that tiny little voice in the back of my mind that continues to look around for a reason.

Sometimes these questions can really hit a nerve and sometimes I know that the person asking is just trying to help. Sometimes though, you just want someone to tell you that you're doing a good job.

“You Might Die, but It’s Worth It”

I was recently contacted by a midwife who asked me if I would be interested in using her services to have a home birth. She’d gotten my name (and the names of others) from a (former) friend who I haven’t spoken to in years. Apparently, former friend had used her to attempt a home birth a few years ago. She knew a lot about my situation and my conditions, but I’m still not sure exactly how. I guess with sharing information on sites like Facebook, it’s not that surprising that people you don’t talk to know things. A quick Google search of the midwives name didn't bring up anything official.

I politely told her that I was not interested in a home birth. I am high risk, over a half an hour away from the closest hospital and very near the end of my pregnancy. I have an incompetent cervix with a cerclage in place, I am Group B Step positive and at risk for preeclampsia.

She didn't accept my answer.

I don’t have an issue with certified nurse midwives at all. They work closely with doctors and usually work in hospitals or birthing centers that are attached to hospitals. They are medically trained and have to be certified nurses before continuing their education to become certified nurse midwives. Unfortunately, this woman, as well as the women that she works with are not certified nurse midwives. They are what you call “lay midwives” or “entry level midwives”. They are not medically trained, most not having any education past high school. It is illegal in most states for them to practice medicine, but they do anyway. They are not legally allowed to administer life saving techniques or use life saving equipment. They cannot perform surgery or any type of suturing. Due to the fact that most medical techniques and interventions are prohibited for them, they often use alternative methods or holistic treatments which aren't proven, tested or effective.

When she wrote back, I began to think that my best interest and the safety of my baby were not really high on her list of priorities. She kept saying things like “take charge of your body” and “don’t let doctors force you to have unnecessary procedures”. She claimed that pretty much all the interventions I needed were not necessary and in fact, were dangerous. She said that my incompetent cervix could be treated with a high protein diet and chiropractic care. My GBS (Group B Strep) could be “cured” using garlic gloves, placed in my vagina. She said that preeclampsia is only really dangerous if you’re in a hospital where all the other “forced procedures” stress out the mother and cause high blood pressure. She kept stressing that “my body knows what to do and doesn't need doctors forcing it to do things it’s not ready for” ,but in reality, my body, like millions of other ladies out there, doesn't always know what to do or when to do it. The wonders of modern medicine have helped us all get pregnant, stay pregnant and have healthy babies safely.

By the way, an incompetent cervix can’t be treated with diet change. Most women don’t even know they have it until they miscarry their babies in the second trimester. I was extremely lucky that my highly trained ultrasound tech and doctor noticed it on a routine ultrasound. An ultrasound (which most midwives advise against) is the best way to make sure that you don’t have this condition. GBS can not be treated by putting garlic in your vagina. A simple blood test (another thing looked down upon) can let you know if you are one of a fourth of the female population that carries this. It’s harmless for the most part to us, but for a newborn baby who contracts it during birth, it can cause a serious infection that leads to pneumonia, brain swelling or even death. What can protect your newborn is a simple IV hook up of antibiotics during labor and birth. Preeclampsia is a near fatal issue that effects a lot of pregnant women. The only way to ‘cure’ it is delivery of the baby. Waiting and ignoring the signs can lead to maternal and infant death. It has nothing to do with other procedures you might need in the hospital.

I told her all of this and what did she do? She pulled the autism card.

“I know that you already have a child at home with autism, most likely caused by the hostile, cold environment of the hospital. Being forced to endure needless procedures and being pumped full of harmful toxins is the leading cause of autism in babies. Doctors have a shot or an IV for everything it seems and women just don’t need them. All they care about is lining their pockets with more of your money. They aren't happy until you’re tied to a bed, paralyzed from the waist down while they needlessly rip your baby from your uterus. They spit in natures face and try to tell a woman that her body doesn't know what it’s doing. Having a baby at home, in the peaceful surrounds of love and caring is one of the only ways to ensure that you’re baby doesn't contract a disease like autism. It’s also been shown to lower the risk of diseases like ADHD, diabetes and childhood obesity. The choice is yours and you should trust your body to know what it’s doing. Please consider my offer. While the risks are low that something might happen to you or your baby, they are higher in a hospital. Proving to the world that you can take charge of your body and showing people that even those with complications can deliver at home is a great goal to have and will enhance your birthing experience knowing that you proved greedy doctors and savage pharma companies wrong! Imagine being able to tell others that! My number is (number removed), please call me so we can meet and talk face to face. Don’t let the fear spread by doctors cause you to make choices that will lead to another of your babies to suffer with autism.”

I wrote back, one simple sentence.

“You can’t use autism to scare a mother with an autistic child. I've heard it all at one point or another and the scare tactics used are simply untrue.” 

To say that risking my safety and the safety of my son would be worth it to “prove doctors wrong” is just strange. I am not a stunt-woman  I am not a martyr. I have nothing to prove to anyone and giving birth shouldn't be to make a statement. I could care less about MY birth experience. Giving birth isn't about me, it’s about making sure I do whatever I can to ensure that my son is born healthy and safely.

For anyone to encourage someone like me to have a homebirth, they must be out of their minds. Or, in this woman’s case, trying to find women dumb enough to risk their lives to prove her case, spread her word and make a statement.

I have never been pressured to have anything done in the hospital that I didn't want. I didn't have an epidural or any pain medications with Bella and besides the IV antibiotics, nothing else was done. If any of the things she claims actually caused autism, there would be way more cases of autism out there and bottom line, studies show that there is just no connection.

I know that people want to know what causes it and I know that some people will say anything to get others to do what they want. Using autism as a scare tactic, using it to frighten women into risking their lives and the lives of their babies is just pathetic.

All that does is show me that this woman has no clear case to insist on a homebirth. She has no real evidence that it’s more beneficial or that it’s safer. All she has are some unproven holistic treatments, misinformation about prenatal care and, basically, a bunch of stuff she made up.

Again, I have no issues with midwives. Well trained, educated midwives who are certified, are great. Low risk patients are fine, as long as they know that anything can happen, no matter how uneventful the pregnancy. Untrained, uneducated lay midwives who try to convince a high risk patient into having a homebirth… should be a crime. I know there are women out there who fall for the speeches. It’s easy to find them. A simple Google search will reveal the mothers out there who lost their babies because they were convinced to homebirth their babies so they wouldn't be autistic.

I stand by the statement I've made a hundred times already; I would much rather have a child with autism than no child at all. I would rather have a baby, safely in a hospital, with trained medical professionals on hand to help if there is an emergency than to risk everything and end up with nothing.

If you want to argue about autism with the mother of an autistic child, you better make sure you have all your ducks in a row. There is little that you can say that we haven’t heard already and most of the time, the “facts” you hear about are nothing more than fiction.