Interview With my (almost) Five Year Old

Me: So, Rayne. Tell me about your sister.

Rayne: Bella is my favorite sister.

Me: Do you remember what I told you Bella has?

Rayne: Yes. Autism. Right?

Me: Yes. Do you know what that is?

Rayne: It makes Bella brain work different than mine and yours and daddy’s.

Me: That’s right.  What’s your favorite thing to do with Bella?

Rayne: Everything. We do everything together, except at school cause we’re not in the same room.

Me: Does Bella ever make you mad?

Rayne: Sometimes when she lays on me when I’m trying to sleep. Sometimes too when she cries.

Me: It makes you mad when she cries?

Rayne: Not mad, sad. I get mad when I can’t figure out what’s wrong.

Me: Mommy and Daddy will figure out what’s wrong. You don’t have to be mad or sad.

Rayne: I know what’s wrong better though. Bella can’t talk but I know what’s wrong.

Me: How do you know?

Rayne: I just do.

Me: Oh, okay….

Rayne: I know when it’s the movie that’s scared her. I know when she needs a drink or when she’s just tired but sometimes there is nothing wrong and she just feels like crying.

Me: What do you do then?

Rayne: Just let her cry. It helps her feel better.

Me: How do you know it helps her feel better?

Rayne: Cause when she’s done crying, she laughs and smiles. You told me that sometimes she gets full and it has to come out, remember?

Me: I do. (I told her that sometimes Bella’s body gets full of emotions and it has to come out so that’s why she has these meltdowns. When she gets all of it out, she feels better.) I’m glad you remember that.

Rayne: Thanks.

Me: Do you think there is something wrong with Bella?

Rayne: Bella is just Bella. (A girl) at school like to spin around like Bella does. Everyone tells her to stop but I just spin around with her. It makes her laugh. (She’s talking about a little girl in her class that has Asperger's Syndrome and her only ‘stim’ is spinning around in circles).

Me: Why do you do that?

Rayne: It makes her feel happy. Some of the other kids just laugh at her, but that’s not nice. If they spun around too (they) would have fun too.

Me: Thank you for being nice to her.

Rayne: You’re supposed to be nice to people, Mommy.

Me: What do you think about you and Bella being in  your own room? (something we've been trying to do for about two years now).

Rayne: No.

Me: Why?

Rayne: I would miss Bella and Bella needs me to stay in the room with her. In case she gets lonely. No. I think I should stay in there.

Me: You know, eventually, you’re going to want your own room.

Rayne: Maybe when I’m old, like you are, you know, like, 59 or something.

Me: Rayne, I’m not 59! I’m 31.

Rayne: Okay, when I’m 31, like you. Then I’ll get my own room and I’ll a husband too, like daddy! (she giggled) and Bella will have the room next to mine.

Me: You want Bella to live with you?

Rayne: Yes. Of course.

Me: What if your husband says no?

Rayne: He wouldn't cause he would love Bella too and if he doesn't love Bella too then he’s not my husband.

Me: You’re a sweet kid you know that?

Rayne: (she blushes) Mommy!

Me: What would you say to someone who makes fun of Bella?

Rayne: Hmmm, I would tell them that my Daddy fights in a cage and that he could beat them up.

Me: Rayne, Daddy’s not going to beat up a kid!

Rayne: Fine. I would tell them that making fun of Bella means that they are the mean one cause Bella would never be mean to them so that’s not fair. If they make fun of someone who can’t talk then they are just mean.

Me: That’s true.

Rayne: Then I’ll have Daddy teach me how to beat them up.

(Having a trained MMA fighter as a husband and father to my children has caused a little bit of an issue. We know this. They've watched their father train and work out and spar. We clearly need to teach her that there is a time and a place for everything. At the same time, I do love her protectiveness and if someone were to physically provoke her or her sister, I can’t say that I wouldn't want them to know how to protect themselves.) 

Me: Any last words?

Rayne: Can I please go watch “Spongebob” now?

Me: Yes you may.

The End.

I have to say that all the warnings I got from doctors about my older child being jealous or acting out did kind of make me nervous at first. I waited and waited for Rayne to act out and rebel but she never did. I waited for her to act like she was angry of the attention her sister received, but she never did that either. In fact, at just shy of five years old, I've seen Rayne display more patience and more care for her sister than most adults. It’s an amazing thing to watch as they bond and grow up together and it’s something that I hope continues as they get older. Rayne seems to have this uncanny ability to know what her sister is thinking and they have this bond that transcends verbal communication. It’s more than any mother can ask for and I consider myself extremely lucky to have such a well rounded, intelligent, sweet and caring little girl. Rayne definitely is something else.

Graphics Share Pt. 3

April is Autism Awareness Month, and today, April 2nd, is National Autism Awareness Day. Please feel free to use and share these Facebook Cover photos I made to show your support and to help spread awareness for autism. 

Granted, in this day and age, autism is something that a lot of people have heard of, but few truly understand. Encourage others to really learn what autism is all about. A little understanding and compassion goes a long way. 

Here are some Facebook cover photos I made that I would like to share and encourage others to use and share as well. 

Also, please feel free to check out Graphics Share Pt. 1 & Graphics Share Pt. 2 for more Autism Awareness related graphics that you can use to show your support. 

Progress Report

Well, we had Bella’s second six month progress report meeting and I am proud to say, she is doing great! Everyone is quite proud of the advancements she’s made, especially when you consider that less than five months ago we were told that there was a very high possibility that she’d never use words on her own or be able to communicate with us.

To put it in perspective; three months ago, before she began her applied therapies, Bella didn’t use any words on her own. The ones that she did use were usually being repeated. Today, Bella has a vocabulary of about 12 words that she uses on her own and in context.

Her communication towards us, and others have improved so much that there are days when I am literally smiling ear to ear listening to her. Having the ability to ‘tell’ us what she wants has lessened the frequency of meltdowns and has lowered the level of frustration for not just her, but for us too. She still uses signs, but now she can also say ‘thank you’, ‘please’, ‘you’re welcome’, ‘juice’, ‘more’, ‘food’, change’, ‘all done’, ‘yes’, ‘no’, ‘mommy’ and ‘daddy’. She can also identify her sister and brothers (almost) by name and point them out when we ask her who it is.

She’s responding to one to two word directions, like ‘get shoes’ or ‘brush teeth’ and we’re even making some leeway on potty training.

Another thing we’ve noticed that is Bella loves music and responds to it greatly. She’s been caught, on more than one occasion, walking around the house, singing! One of her favorites, right now, is “Old McDonald Has a Farm”. She loves making all the different animal sounds. She also knows all the words to “Twinkle, Twinkle Little Star”, “Row, Row, Row Your Boat” and she can sing the “ABC” song, although I’m not sure if she knows that it’s the alphabet or just a song.


She loves to dance at home, so they thought that she might like to do it at school too, but they only offer Zumba. The loud music and screaming kids isn’t something that she can deal with well with her auditory sensitivity. Instead of Zumba, she spends extra time in the sensory room and seems to be really benefit from that.

Bella has made so much progress in physical therapy that they are going to drop her down to just one class per week. That actually works out well, giving her some open time during the week for another speech class or another music therapy session.

Although Bella still has the overall development of an 18 month old, the progress that she’s making will most likely bump her up to the 24 month old level.

Another thing that has amazed us all is the fact that, even though autistic children are unable to empathize or really identify emotions in others, Bella has been able to learn what an appropriate reaction is to certain emotions. So if one of her classmates is crying, Bella will go over to them and pat them on the back. When she hears her baby brother crying, she’ll try to give him a stuffed animal. She may not know what it means when someone cries, but she understands that trying to make them stop is the right thing to do. I guess it’s just a longer way to learn how to respond when someone is showing a certain emotion and while it may seem to come naturally to most people, all things like that are learned somehow. I guess Bella just has to learn it another way.

As with all progress, there is always some regression or, in our case, a standstill. Bella still tries to run from the classroom, and when we take our walks or let her walk on her own at the store, she still tries to run. I think that running will be an issue that we’ll have to deal with forever, not just because it’s a common issue among autistic individuals, but because it seems to be something that Bella loves to do. Hey, maybe she’ll be a future track star? You never know. Her inability to sense danger or realize that something could hurt her is something that we’re always working on.

All in all, I am very proud of her and so thankful for the hard work her therapist and teachers put in. I am also very grateful that they found a wonderful one-on-one aide to work with our daughter. Bella seems to love going to school and she’s very comfortable around her teachers. And of course, they couldn’t say enough wonderful things about how sweet she is. They all love her to pieces.

We were told that we’re doing a great job with her at home, which, of course, is always nice to hear.

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.

End of the Year Progress Report

It’s been a little while since my last post. The holidays this time of year have a way of letting time get away from you. After we finished up with Halloween, it seemed it was time to prepare for Thanksgiving. After recovering from Thanksgiving, it was already time to get set for Christmas.

With the end of the year quickly approaching, it marks a huge transition for Bella. Since she’ll be turning three in February, she’ll begin attending classes for the 3-5 program right after the holiday break. This will be a huge change, not only for her, but for us as well. While we are very excited for her to begin this new chapter in her life, we are also a little apprehensive as to how she’ll adjust to such a huge change in her schedule and routine. She’ll be going from two half days a week to five full days. She’ll be getting five days of speech as well as an increase in her physical and occupational therapies. She’s made such progress with her current schedule that she can only go to improve when she begins to attend more days per week.

Unfortunately, Bella tends to regress when on extended breaks from her routine. With the two week break coming up, we’re worried that it may take her a little longer than normal to adjust to going back to school and being in a brand new classroom, with new teachers and new classmates.

While, like always, Bella continues to improve, it’s slow going on most fronts. Bella still doesn't use many words on her own and still mimics and repeats a lot of what she says. She has, however, excelled at counting and can now count to fifty, mostly on her own. She’s mastered zipping her own coat, brushing her teeth (on her own) and, after getting her new shoes with Velcro straps, can put on her own shoes! We've managed to work with her occupational therapist in getting her to stop running so much, so outside ventures have been much safer and a lot more fun.

We've also managed to implement a way for her to communicate her needs and wants with us. It used to be that she would just cry (out of frustration) as we continued to guess what she wanted, getting it wrong, most of the time. Now, she’ll grab our hand and lead us right to what she wants. It’s limited the amount of frustration we all feel and in turn has reduced the amount of meltdowns we've experienced.

We’re very happy with her overall improvement but still struggle with a couple of issues that none of her therapies seem to be able to help. Sleeping and eating are two issues that just never seem to improve. The medication she was put on for her sleep issues seems to have no effect anymore and she’s gone from being, what we’d call a picky eater, to downright refusing to eat anything that isn't the consistency of baby food. Unfortunately, a growing, almost three year old, can not live on yogurt and mashed potatoes. She’s on a strict daily regimen of vitamins and supplements to keep her healthy until we can figure all that out. As for the sleeping problem; well, we’re still working on that.

Overall, we’re very happy with the progress that Bella has made this year. As the new year starts, and so begins her new program, we have high hopes that even more progress will be made. Slow moving or not, progress is progress. Working closely with her teachers and therapist, we hope to integrate what she’s doing at school, to what we’re doing at home.

Bella is growing up fast and she’s turning into a truly beautiful, loving child. With so many people around who love and care for her, I have no concerns that she’s getting the best help and care that she can be getting right now.

She impresses us more and more everyday. 

My Confessions #4

This is a picture of a billboard that P.E.T.A put up in New Jersey. One of the top 14 states with autism diagnosis in the country. Needless to say, it caused some controversy.

Does this bother me? Yes. It does. It bothers me because P.E.T.A is using a hot button issue like autism to push their own agenda by spreading false information. The people of P.E.T.A read ONE report that said cutting casein from an autistic child’s diet can help relieve some of the issues caused by autism (while this has helped some children, this too isn't a proven fact). They then used this information to launch a billboard campaign in New Jersey saying that cow’s milk causes autism. They ignore the fact that casein is found in many foods, not just milk and some of the those foods are considered vegan, and that no food has ever been proven to cause autism.

I've seen and read some insane facts about P.E.T.A over the years and it’s always shocked me how they twist facts to suit their needs. The most recent of their eye-roll inducing “protests” includes releasing a parody game about Pokémon to voice their disgust at the way Pokémon (computerized, fake animals by the way) are kept in balls and used for human entertainment and fighting. Since Pokémon has been around for the better part of 15 years, I don’t really understand why they now have an issue it. They call it "virtual animal abuse". Speaking of computerized animals. They've also begun protesting Call of Duty, since players are expected to kill Nazi attack dogs in the game. P.E.T.A suggests, petting the dogs and playing Frisbee with them instead. May I remind you again, that these are not REAL animals and if ever someone was accosted by a rabid Nazi attack dog, I’m wondering how you’d pet it if it bit off your hands. They, however, don't seem to have an issue with the fact that you kill humans in the game as well. Interesting fact: P.E.T.A euthanized nearly 95% of the adoptable dogs and cats in it’s care in 2011, using the excuse that the cost of care is too high...yet they spend millions and millions of dollars ($34.5 mil budget) on billboards of naked celebrities and campaigns that tell children if their father likes to fish, then he’s probably going to kill your dog.

Many parents, myself included, never gave our children milk products. Most of our kids began showing signs of autism, before they were weaned off breast milk or formula. In my case, we all have a lactose intolerance and our children were all on soy milk or almond milk when they did begin drinking milk.

This is also something that has begun bothering me a lot. I know that with every hot topic issue there is a period of time where the backlash starts. I can’t really explain why it happens, but it does. It happened with A.D.H.D and it happened with P.P.D so it was only a matter of time until it happened with autism too. It gets on my nerves sometimes though when someone asks you why your child is doing something, and you tell them only to have them say that “you’re using autism as an excuse”. Trust me, I’d much rather say “well, she’s kind of being a brat today”...at least then it would be a normal reason as to why she’s doing what she’s doing. But guess what, sometimes, her behaviors are a direct result of her issues with autism. Sometimes she’ll get overwhelmed at the grocery store or on the playground and she does what we call ‘a protest’, where she’ll lay on the floor/ground with her hands over her ears. Why? It comforts her. She’s not bothering anyone and even when she does yell or scream, it’s not directed towards anyone. There are some who have snide remarks to say and just have to comment. Sometimes I’ll get mad and tell them “she’s not being bad, she’s just overwhelmed” or I’ll explain that she’s autistic and can’t help it sometimes. Then, I’m accused of making excuses for her behavior.

It’s not just annoying, it shows that sometimes people really do need to show some compassion. I get that there are probably people out there that might play the “autism card”, but sometimes you have to realize that some autistic children do have issues with things that you’re not going to understand. Telling a parent that they are “letting their kid” act that way is insulting. Most of us have no control over the reactions our children are going to have in certain situations and the only thing we can do sometimes is to try our best to comfort them and make them feel less overwhelmed. Telling me to “leave her at home until she learns to act right” just makes me want to punch you. I've been witness to many, MANY children who have full blown temper tantrums when they don’t get the toy they want, or they’ll throw things or actually hit their parents when they don’t get their way. For them, it’s a logic of “kids just being kids”...so why is it that I, as the mother of an autistic child, should “keep my kid at home?”

Another issues I've been running into a lot lately are other parents that almost seem to be afraid that their child will miraculously contract autism from my kid. Now, we all know that autism isn't contagious, but that hasn't stopped many reputable colleges and foundations from printing stories that claim that kids who live near a child with autism have a higher percent chance of getting a diagnosis of autism themselves. What they fail to publish is the fact that nearly all of those kids get their diagnosis taken back after more testing and evaluations. See, what happens is, kids that spend time with a child with autism will sometimes mimic certain behaviors, all kids do this. The parents of these kids, having also been around a child with autism, will begin to see every thing their child does as a sign of autism. Call it paranoia or just being a little too sensitive. They take their kids in for an evaluation and at first they show a few signs that they've begun mimicking  but after more testing, it's shown that the child is fine.

I've had people literally move to another area of the playground after finding out that Bella has autism, be that from casual conversation or from just observing some of the typical “autistic like behaviors” that Bella does daily. It’s kind of obvious sometimes. I've had a few people flat out tell me that they’d rather not have their kids around Bella because they didn't want their child to “pick up any bad behaviors”.

It is heartbreaking sometimes to hear these things and to know that Bella is going to have to deal with people like this her whole life. People with autism are incapable of judging others and are unable to lie for the most part, sometimes to a fault. I sometimes imagine what the world would be like if there were more people that were “afflicted” with those same “ailments” (if you can really call them that).

All I can do right now, is be thankful that Bella doesn't know the difference and hope that as she grows, more people will be willing to get to know her, instead of her condition. As a parent, that’s the best I can really hope for and with this blog, I hope to let more people know that even a little compassion can go a long, long way.