"If It's Broken. Fix It." (Autism Definitions)

Every year the number of children being diagnosed with an autism spectrum disorder grows. It’s gone from 1 in every 1000, to 1 in every 500 to 1 in every 110. It’s been called an “epidemic”, “The New ADHD” or “The new designer disorder”. People have blamed vaccines, pollution, the environment, radio waves, chemicals, processed food and genes. Still, no one knows exactly what causes it.

There is an uproar in the autistic community over the changes that the American Academy of Pediatrics is making to the definitions of autism. They are worried that the criteria for an autism spectrum diagnoses will change so much that their child will no longer be considered autistic. This will limit or eliminate the services and resources they currently get and any help they’re receiving may be cut off.

I can only assume that the reason the American Academy of Pediatrics is revising the criteria is to better diagnose those suspected of having a disorder. I can certainly understand why some people are worried. Those with Aspergers Syndrome will no longer meet the revised definitions. Also, some highly functioning children will be labeled with something more suited to their individual symptoms.

Personally, I think that the number of cases of autism has risen simply because autism as a diagnoses is being used more and more as an umbrella term for many different issues. Not only that, but the more and more parents hear about autism, the more and more SOME of them begin to see signs and symptoms where there truly are none. There have been hundreds of children diagnosed with autism, only to be “undiagnosed” after further treatment.

Last year, a doctor who’s name was never released, diagnosed over a thousand children with autism. More than half of them had their diagnoses removed after an in depth evaluation.

Upon reading a number of reports, I found that there have been no studies done as to how many of the 1 in every 110 have had their diagnoses reversed. So the number that’s being reported has to be much higher than the number of children who legitimately have autism.

I recently met a mother who was convinced that her three year old son had autism. He was well behaved, sitting in the corner of the doctors office by his mothers feet. He was playing with one of those toys where you push the little plastic airplane thingy over the looping wires to the other side. When she spoke to him, he looked at her, responded and followed her directions just fine. When he spoke, it was in short, one word answers, but the words he said, were in direct response to the conversation. He didn’t have noticeable repetition to his movements… but then again, I’m not expert and who’s know their child better than a mother.

Curiosity got the best of me, so I asked her why she thought that.

“He’s so defiant. If I say do something, he says no. He never listens to me.”

I felt like saying “Welcome to the wonderful world of parenting, have you been here long?” Instead, I tried to be helpful. I directed her to an online MCHAT where she could answer some questions. Not only would this reassure her that her son did not, in fact, have autism, but it would let her know how much they really look for when determining who is “at risk.“ Whether she listened to me or brushed me off, I will never know.

Sitting down with Bella’s teacher at her orientation opened my eyes to exactly why they are now changing the guidelines. A mother who’s son was getting speech therapy, flat out asked her to lie to the doctors and tell them he was autistic. Of course, she refused, but couldn’t help but ask why. She openly admitted to wanting the disability check.

I read a news story about a lady in North Carolina who was arrested after CPS found out she was trying to force her five year old to pretend to be autistic, going so far as to make him wear diapers. When they police asked her why, she said she wanted the attention she would get from other people. Another woman named, Rosie Costello, a 46 year old mother of three, was sentenced to only three years in jail after she was caught forcing her children to pretend to be “retarded” in order to collect their SSI checks.

With the new criteria in place, it will be harder for some children to meet them in order to get an autism diagnoses. However, like so many have stated, there are still resources for those children to get, most of them free. Programs like Early Intervention are not just for children with disabilities. They offer speech therapy, occupational therapy and other great programs for a wide variety of children, usually at no cost.

I understand that there are a lot of parents out there who are worried that their children will be kicked off any services they currently receive if their child no longer meets the revised behaviors being looked for. I also understand the other side of the coin. There are more and more children being diagnosed because it’s becoming and easy blanket diagnoses.

While there are children, who actually have autism, waiting in line for months to get the treatment and services they need, there are more and more false diagnoses and fraud cases popping up in record numbers. Whether by quick to diagnose doctors, or awful parents trying to milk the government for the disability checks, this issue needed to be addressed sooner or later.

I’ve read over every revision, many times, and although there was little hope for us to start with, I almost wished that Bella wouldn’t still meet the guidelines for a spectrum disorder.

She does.

I've accepted the fact that my daughter is autistic months ago, but I guess there was always that sliver of chance that maybe she wouldn't be stuck with this label the rest of her life.

We have yet to start any processes of applying for disability for our daughter. We wanted to do all we could to make sure she was getting the help she needed before anything else.

Next post, I’ll tell you how easy it is for a mother to defraud the government for a check, but how hard NY state is making it for me to be seen as my daughter certified, primary caregiver. Talk about a lopsided system.

First Day of School

So, the morning started out on the rough side since I had to wake Bella up about two hours before she normally gets up. When her schedule gets changed THAT much, it sometimes throws her off for the entire day. So it was rough sailing with the whole getting dressed, brushing hair and teeth stuff.

When we first got to the school, she seemed fine. As the hallway we were standing in slowly began to fill up with parents and teachers and lots and lots of small kids, the more anxious and nervous Bella started to get. Her teacher, tried to strap her into, what can only be described as a stroller built for octuplets. Bella wasn’t having any of it. She broke down a little bit and sought me out. Her teacher and I decided it would be less stressful on her if I just walked her on down to the classroom and let her roam around for a few minutes.

Once in the class, she explored for a bit and seemed okay. When the kids arrived, she did start to “stim” a bit. She found her own little corner of the room and spun around for a few minutes. Another little boy came over and started spinning with her. I thought that was so sweet. It made me feel a bit better about certain things. These kids are all so young that she doesn’t stand out to them as being “awkward” or “weird”. She’s just another little kid who likes to spin and chase bubbles. She still did her own thing most of the time she was there, and tended to move away when other kids got too close to her. She didn’t really interact with anyone besides her teachers and I, but I have high hopes that the more she goes and the more comfortable she gets with the other kids, that the less she’ll shy away from them.

I got to sit in with her speech therapist to see how they do what they do. I picked up on a lot of very helpful advice. Mostly, that in order to really get her to communicate with us, we have to help her curb some of her sensory issues. Her speech therapist said that she’s helped a lot of children with speech issues and sensory issues… but only a couple with speech, sensory and autism. We also got to visit the “Sensory Room”, which is an amazing little room set up just for kids with sensory issues. It has a ball pit!! Bella loved that. She got in and laid down on her tummy. There was also a saucer swing and a big trampoline type jumparoo. She had a blast. I am seriously thinking about clearing out our safe room (living room) and setting up some of those sensory therapy type things for her. The other kids would love it too and it might help her stay a little calmer during the day.

We still haven’t had her ride the bus by herself, so I’m not looking forward to that at all. Her cousins ride the same bus, so I am hoping that it will make her a little more comfortable to go alone. I won’t be able to go with her when she goes back on Tuesday. It’s going to be hard for me. I mean, I was THERE with her today and I was still nervous. I don’t want to be one of those mothers that watches their kids like a hawk and hovers over them all the time. I know there are going to be times when she chews on a crayon, or bumps her head on a desk (she did those things today) and I am NOT going to be there to stop her or help her. I have to let go of some of my trust issues… and there are a lot of them when it comes to my kids. Today was good though because I got to tell her teachers some of the things they should watch out for and what works best for Bella when she’s having a hard time. Her teacher is wonderful and I feel that Bella will be in good hands when she’s not in mine.

We’re very proud of our little girl. Rayne was a little jealous and told me that she wanted to go to school with Bella. So I’ve got the paperwork process going to get her enrolled. They won’t be in the same classes or anything, but Bella’s teacher told me that Rayne can come visit Bella when ever she wants. All-in-all, it was a great day. Bella had a lot of fun and I couldn’t be happier with how everything went. Fingers crossed day two goes well. It’ll be her first day going at it alone.

(Also, I am putting together a picture album of all the things we've changed around in our house in order to help Bella and keep her safe. My husband created a really innovative contraption to keep sockets, plugs and cords from being messed with that I'd like to show off a little. So, it's still in the making, but keep an eye out for that one.)

11 Ways Autism's Made Me Better

This might not be the most creative blog I've done, I’m sure that if you google “How Autism Makes Me a Better Parent”, you’d find a lot of these from many parents out there. I guess sometimes it’s better to try to focus on the positives when it comes to situations that are beyond your control. So, what has autism taught me about being a mother? Quite a bit. Even though, I think, I was a pretty awesome mother to begin with.

• Patience really is a virtue. To say that you need patience is a bit of an understatement. There are days when I repeat the same words over and over so many times that I lose count. I will stand at the bottom of my stairs waiting because the excitement in Bella’s eyes as she walks down the stairs BY HERSELF is something worth witnessing. Even if it does take twenty minutes. I will spend two hours changing her clothes until we find something that she’s comfortable in. Why? Because I’m her mother and that’s what I have to do.

• Witty comebacks. When there are rude people asking me questions, it helps to have a little wit on your side. You can only be asked so many times by rude, snarky people “why doesn't your daughter talk yet?” until you have to come back with “maybe she just doesn't want to talk to you, the stranger, in her face.” 

• I get to be like those rogue cops in the movies that go off and do their own thing. You know, the ones that have that situation come up and their boss says “leave it alone, you’re off the case!”, but you just know you can handle the problem if you do it your own way. Well, that’s me. I don’t go by the book.. Mostly because I can’t. But more or less just because I don’t want to. 

• My heart explodes everyday. Not literally of course, but figuratively, my heart swells every time my daughter does something that she couldn't do the day before. Little victories are their own celebration. The first time she came over and placed her sippy cup in my hand, instead of crying until I guessed what she wanted… I think I hugged her for ten minutes, celebrating, before I remembered to actually give her some juice.

• Thick skin. Growing a thick skin is par for the course. It’s something that you need to have in order to get through most of what is thrown at you. You have to learn not to worry too much about the petty stuff. You have to let certain things bounce off you. You have to try your best to ignore the rude comments you can get. When someone calls my child a brat because they witness her having a little meltdown, or when someone feels the need to tell me that, after seven months, I should get a second opinion, like it wasn't the first thing we did, I want to yell. I want to scream at them sometimes. I don’t though. Why? It will do nothing but put ME in a bad mood. Yelling at every person who says something that I don’t like is a waste of my time and energy. Not to mention it will make me look like a crazy person biting the heads off every person who rubs me the wrong way, whether intentionally or by accident. (See two dots down) 

• Embracing my dry sense of humor. Never in my life have I enjoyed my own sense of humor more than I have in the last few months. There are just certain times when making a joke is easier than doing what you really want to do. Be that scream, or cry or just give up. Sometimes the jokes I make aren't for everyone. After redressing my child for the tenth time, cracking a joke that she may have a future in stripping probably isn't the most motherly thing to say. But hey, it beats getting frustrated. 

• We've learned to give people the benefit of the doubt. There is a quote from a movie that Cy and I both like called “Our Idiot Brother”. Paul Rudd’s character, Ned, says “"I like to think that if you put your trust out there, I mean if you really give people the benefit of the doubt and see their best intentions, people will rise to the occasion." That pretty much sums up what we do now. Only after people show us that they are purposely being negative or rude, do we react the way any parent would react when someone is being a jerk to their child. 

• Have more fun. We've learned how to find fun in almost everything. Building a fort in our living room with the couches and blankets can be tons more fun than going out on our own. We also know that being really tired the next day is more than worth staying up late together and watching a movie in our room while the kids are sleeping. Bella can be a handful for people who aren't used to her. So far, the only person who’s been able to handle her as well as we can is my mother. When she watches the kids for us, half the time, Cy and I end up doing crazy things like… sleeping. I know, LAME, right. 

• Swallowing your pride. As a mother, you want to do it all. You want people to think that you can handle everything that comes your way. One thing I've learned over the last seven months is that I am not Superwoman. As much of a blow to my already semi-deflated ego it was, I realized that sometimes, I just have to ask for help. Cy and I have an amazing support system in place. I can’t express how much we appreciate them. 

• Being mushy. Clearing having a child with autism also teaches you how to be super mushy while you write a blog, on the verge of tears because you have so many awesome wonderful friends and family in your life. It really makes you cherish what you have. 

• I think about myself more. Really. You know that saying "If Mom's having a bad day, everyone is having a bad day"? Well, it holds truth. I know that in order to properly care for ALL my kids, I have to be the healthiest, calmest, least cranky mom I can be. I find myself taking a few extra minutes during the day, just for me. Listening to a song, or even painting my nails. Anything really. I also find myself choosing a salad over a cheeseburger and trying really hard to curb my addiction to Coke....THE SODA. I need to be in top form in order to do what I have to do. I know it shouldn't have taken my daughter for me to realize that, but I guess all that matters is that I'm trying. 

So, to conclude. Patience, love, rogue cops, having fun, thick skin, salad, wittiness, support. All things I either learned or improved on thanks to my amazing little girl. And she’s done all this without even saying a word. Kind of impressive if you ask me.

What About Your Son!!

It’s a question I used to brush off either because I was in denial or maybe I just didn't want to believe that there could be anything wrong with my son. When you have a new baby, you sit and stare at their smooshy little face knowing they have the rest of their lives before them. No one wants to think that their innocent little newborn could be autistic.

People ask us all the time.

“Are you worried about your son?”

Most of the time it’s asked out of genuine concern by people we know. Sometimes, however, it’s bluntly stated by those who just can’t believe we’d have another child after finding out that Bella has autism. Even though we found out about Bella while we were already pregnant with our son, it wouldn’t have changed our minds about having another baby. This was something that Cy and I had talked about when it came to deciding what we wanted our family to be. We’d always wanted three kids together and after having two lovely little girls, we hoped for a boy.

Anyway, the answer to the question used to be “No”. Like I said, maybe it was partly because we just didn’t want to think about it.

The honest answer is “of course we are”. How could we not be. The chances of having a boy with autism is 4 times greater than that of having a girl with it. The fact that we already have a girl with it makes us nervous about our son.

The worry strikes at me every now and then. When he’s not babbling as much as he did the day before. When too much time goes by and he hasn’t smiled. When he won’t look at me when I’m talking to him. Then I sit back and remind myself that he’s only five months old. What five month old do you know makes total eye contact while having a conversation?

They tell you not to compare your children, but like most parents, I do it anyway. Rayne reached all her milestones either ahead of time, or right on time. Then again, so did Bella. Rayne was walking by a year old, and Bella was too. However, while Rayne was babbling up a storm at 5 months old, making sounds at 7 months and speaking her first words by 9… Bella wasn’t. Bella was quiet, unless she was crying. Besides at night, she would only really cry to let me know she was hungry. She didn’t babble or coo until she was almost 9 months old. Since then, she’s gotten much more vocal, but has yet to actually speak her first word. Sometimes, call it wishful thinking, she does sound like she’s talking, only in a language that I don’t understand.

Our son is developing just fine. He’s reach all his milestones right on time and unlike his big sister, babbles and coos all the time. He does make great eye contact and he identifies faces. He has great muscle tone and smiles and laughs in reaction to what you’re doing. These are all great, positive signs that help us have a more optimistic view of the future.

Cy and I have discussed this at length. We realized that overanalyzing everything that our son does will only drive us crazy. Not only that but while we’re busy trying to decide if what he’s doing is a “sign” or not, we’re missing all the great baby things that he’s doing. Kids grow up way to fast to spend the entire time they’re babies worrying about what COULD be.

With all that said, if there comes a time and we’re told that our son is on the spectrum, it’s not like we don’t know what to do. We’d get him evaluated and set the ball rolling the same way we did for Bella. The thought of having two kids with autism is daunting at times, but there’s no way to know how it would effect him, IF he has it at all. Right now, he seems just fine and even though he's way too young to really show many signs, the vocalizing alone makes us feel better about the future.

So, there will come a day when we have to worry about all of that. Today is not that day. Tomorrow isn’t that day either. Today, we enjoy his laughter and his smiles. Tomorrow we enjoy all the new things he’ll discover. After all, they are only babies once.

Mothers Vs. Other Mothers

Four years ago, while shopping at Target with a friend of mine, we came into contact with someone that changed the way I saw parenting forever. I know that sounds dramatic, but it’s true. My friend had just given birth to her beautiful son and was pushing him in a cart. I waddled along side her, Rayne still weeks from joining us in the world.

At the end of the baby aisle we saw a woman with short brown hair, standing in front of the boxes of Huggies and Pampers.

As we got closer, I saw her take a not so discreet peek into our shared shopping cart. It’s only contents were my friends cans of formula. She had tried to breastfeed little Nathan, but due to the medication she was on for a clotting disorder, she just couldn’t. It made her sad that she couldn’t do it like it she wanted to, but she also know that he child needed to eat.

As I reached past this lady to add another box of diapers to my stockpile at home, she looked at me with a sigh. It’s like she’d been waiting for someone to do just what I had done.

“You really should use cloth diapers. They are safer for your baby and don’t contain dangerous chemicals.” She said it so fast, I almost couldn’t understand her. By the time I was ready to say something, she’d turned her attention to the formula.

“Breast milk is the ONLY thing you should feed your baby. Formula is pushed on mothers to make money for the companies and hospitals. Here.”

She then slipped a home printed pamphlet into our cart, and just as fast as she talked, she left.

What my friend said next, stuck with me. She said that it wasn’t bad enough that she already felt horrible, but now she had total strangers making her feel like a bad mother.

As we left the store, I half expected to see this woman again, and maybe some of her friends, standing out front with giant signs attached to sticks that read “You’re bad mothers”.

Where did this woman get off?

So now, four years later, I am writing a blog about it. The reason behind it is what reminded me of that day in the first place. Talking to another mother at the Early Intervention Center. Her child was there “ to correct a simple lisp” she’d said. She asked why I was there and I told her.

“Did you breastfeed?” She sounded concerned, but it really just came off to me as being nosy. I mean, we’d known each other all of five minutes and that seemed like a really personal question to ask. The fact is, I had breastfed Bella for a few weeks. My kidney issues were acting up and I was put back on my medication. It was either working kidney or breastfeeding, so good kidney won. I explained this, with less detail.

What she said next is one of three times I’ve ever felt like punching out a stranger. I actually felt my fist ball up and my face get angry red.

“Maybe that’s why she has autism. You know, the stuff they put in formula is toxic.”

So like my friend, so many years ago, I was standing there, already feeling bad after just finding out my child was autistic, and now I have a total stranger telling me that it’s because I didn’t breastfeed her.

I knew that I didn’t cause Bella’s autism. Deep down, I think that lady knew it too. She seemed more insulted that I chose not to breastfeed than anything else.

So, years ago that fast talking woman with short brown hair had me questioning what I thought I knew about being a parent. The lady at the Center only went to reinforce it. I’d always thought we were all trying to do the same things.

When did we, as mothers, get off the same page? Call me naive, but I always thought we all just wanted to do our best and raise our kids to be good people. I realize now, however, that it’s breastfeeding mothers vs. formula feeding mothers.
Co-sleeping mothers vs. cribs and bassinets.
Baby wearing mothers vs. stroller mothers.
Cloth diapering mothers vs. Disposable diapering mothers.

Ultimately, when it’s all said and done, it’s really just mothers vs. other mothers.

You can read every book by every so called “parenting expert”, and you can follow every rule to the letter if you want, but while you’re arguing at the playground over who’s doing it right and who’s doing it wrong, you’re kids are probably over somewhere playing together on the slide, or sharing a mud pie. They could care less which one was breastfed and who is co-sleeping.

So, here is a question I would like you all reading this to answer, please. If you’ve ever experienced anything like this, been told that you’re doing something wrong, been asked why you don’t do something else or just been flat out insulted over the comments of another mother, help me understand why YOU think people do this.

Why do you think there are so many mothers putting down other mothers over the choices we make when raising our kids. Feel free to voice your opinion in the comments sections or if you’d rather keep it a little more private, send me a message on facebook. The replies that I get will be a part of a future blog I’m putting together that talks more about this seemingly never ending duel between mothers. I want to thank you ahead of time for any and all replies, opinions and comments you choose to share.

There is no right or wrong way to raise your child. As long as you do it with love, care and stability the outcome is more important than the methods we use. So why are there so many mothers out there condemning other mothers and telling them that they’re “doing it wrong”?

Friends

Most adults say that “they wouldn’t have made it through high school without their friends”. Indeed having friends to talk to and hang out with helps a great deal when you’re a young teenager and your parents "just don’t understand". I wouldn’t say that I had a lot of friends in high school, but the ones that I did have, helped me through a lot of hard times. So when I read an article the other day that said “children with disabilities often go friendless”, my heart sank a little bit.

....it is REALLY hard for me to write this.

When we first learned of Bella’s autism, we had all the typical questions. “Will she be able to go to a regular school?” “Will she ever be able to communicate with us?” “How normal will her life be? Will she be able to hang out with her friends and go to school football games and dances?”

The idea of having friends just came along with thinking of her future. Sitting in her classroom today, I noticed that Bella, unlike the other kids, wasn’t in a little group. She wasn’t playing with the other kids. While they were off sharing a toy or looking at books together, she was in her own little world, pretending to talk on a plastic phone. I realize though, at that age, not all little kids really play with each other, they just kind of hover around each other and do their own thing. The only difference is, Bella may never interact with others the way typical children do. Another big issue with autism is social interaction. Autistic people can’t read emotion on your face. They can’t understand getting upset when that cute boy from fourth period doesn’t call you back. If you’re crying and expect her to ask you what’s wrong, she’s not going to. She just doesn’t understand. She lacks the empathy required to relate to other people on a seriously emotional level. It doesn’t mean that she doesn’t care or that she has no emotions, it just means that she doesn’t have the ability to express them the same way others do.

With us, she’s a very loving child. She loves to be around us, she hugs us and gives us kisses. To the extended family she sees daily, there is a little less affection, but she still shows love in her own way. To people that she doesn’t see often or strangers, she’s blank. She might check you out, but from a distance and most of the time, she’ll be rather apprehensive.

Many studies have been done regarding the relationships that typical kids take with a child with any kind of physical or mental disability. All of the studies came back with the same results. Children with disabilities often have no friends, or very few real friends.  Until they reach young adulthood when the stigma of “fitting in” and “being cool” is not longer a priority, most kids with disabilities struggle to make and keep friends.

I didn’t really know what to feel while I watched Bella sit there alone at the table. I wondered if this was going to be the norm for her. When she gets older, will she WANT to be friends with other kids. It was almost as if the other kids in the room didn’t exist to her. She just didn’t care that they were there. When another child would wander over to her, she wouldn’t look at them. If they got too close, she’d move away.

It makes me wonder how it’s going to be for her when she reaches high school age. Hopefully her ability to communicate improves greatly by then, but she will always be different. She may still have a lot of trouble with social cues. Her social reactions and interactions might not match the ones of those around her. She may always be intellectually behind in some things and she may always have her “odd” mannerisms and a different way of talking.

An anonymous survey given to high schoolers last year revealed that most teens these days just don’t want to take the time to really get to know someone with a disability. One student even wrote “I don’t want them to think I’m only trying to be friends with them out of pity”. So their “excuse” for not trying at all, is so they don’t come off as pitying.

I was reading a message board a few weeks ago where the woman had posted a “rant” about how the school her teenage son attended was trying to “force” her son and his friends into including a kid with a disability on their sports team. The kid wanted to be a water boy, or a towel boy, anything really to be part of the team. The parents of the football players said that “everyone would know it was just charity, why put the kid through that”. So again, they are excluding the kid from being part of something so it doesn’t look like they’re being petty and giving him charity. This doesn’t make much sense to me. Apparently though, a lot of other parents agreed with this woman. Some of the comments and replies said things like “the parents should have thought about this before they brought him into this world”, “the school shouldn’t be trying to force normal kids to be friends with a kid that’s not” and this little gem, “a normal kid and a kid like that have nothing in common. They should just make programs that all the disabled kids can do together. That way none of the normal kids will feel like they have to be friends with them.”

I read these replies through watery eyes, thinking to myself, “I can’t believe there will be people out there who think these types of things about my daughter.” How can adults speak of children this way. Is this really what they are teaching their own kids? I mean, if we, as her parents, and her sister and brother and her other family can take the time to get to know her and realize what a great kid she is, why can’t other people? Is it really that much of an inconvenience to look past the label and get to know the person?

Clearly, I am getting way ahead of myself. After all, my daughter is just starting pre-school. I just can’t help but think about how it’s going to be later in life. If we send out birthday invitations, will anyone come? If she does go to a school dance, will anyone want to dance with her? Will there be anyone she meets that will take the time, look past the quirks and give her a chance to prove what a great person I know she’s going to be?

Will she be able to make friends? Will she be capable of really relating to someone else?

So many questions where the answers are so far away.

It just all hit me at once today, sitting at a table, watching my two year sit alone, pretending to talk on a little plastic phone.

Update (and Goals)

So I thought I would take this time to give everyone a quick update on Isabella. She recently had her two year well baby visit. Doctor says that physically, she’s very healthy. She is very tall for her age, but her torso and upper body are short. She has long legs. (Dancer?) She didn't do well at the doctors office though. She has seen our doctor a lot, but not often enough to really remember him. She still doesn't do well when confronted by strangers. She squirmed and kicked the entire time. She relentlessly tried to pull his stethoscope off and didn't want him to touch her at all. To make it just a little worse, she had to get shots. One in each leg. She was already upset and verging on a meltdown… the shots definitely pushed her timer to zero. Thank goodness Cy was there with me. I had to turn my attention to Gage who was there getting his four month check-up. Cy is amazing with Bella, and did a great job of calming her down long enough to get her dressed and out of the office. It was certainly an interesting doctors visit. Our doctor is aware of her autism, and he’s absolutely amazing with her.

Bella gets to go visit her new school at the Early Intervention Center next week. My mom will be joining us since she’s very involved in Bella care as well. We’ll be touring her classrooms, meeting her teachers, her speech therapist and her occupational therapist. Bella will get to roam around and explore everything before she starts school so she can get used to everything a little bit. I will be able to attend these classes with her whenever I want. I love that they encourage parents to be a part of everything. They do have a bus that will pick her up and drop her off, but I worry that she won’t handle that well at this point in time. She does better with new things if Cy or I is there with her. I know that eventually, I will have to let her do it on her own… but until she lets me know that she’s ready, I just can’t do it.

Our goal for the first six months of Bella’s classes if for her to learn TWENTY words and to learn to productively use them. We have very high hopes that this goal is attainable. We were told by her evaluator that if for any reason we didn’t reach our goals, we could reevaluate what we’re doing and try something else. Applied Behavior Analysis, would be the next step. ABA is a rigorous teaching method that requires up to 40 hours a week of one-on-one teaching by a licensed therapist.  Unfortunately, ABA programs can cost tens of thousands of dollar a year per child. So, we have a lot riding on the classes she’s about to begin.

I would like to thank you all for reading. The genuine care and comment are appreciated and I will be doing a post soon to try and answer all the question I have received via email. A thousand times, thank you for all the love and support.

Compulsion

Bella has an oral fixation issue which I think goes hand in hand with her compulsion problem. I’ve talked to the doctor and both her evaluators about it, but I’ve been told that it’s not OCD and it’s not an impulse control problem. With the little I’ve been able to find on the topic, it agrees with the doctors that it’s not either of those issues. I also haven’t found many other parents who are dealing with this. The few that I have found, haven’t found a suitable solution to curb the behavior.

Bella has this compulsion to do things. The list can change from day to day. Pull the rug up in the living room. Flip everything over. Climb up (nowhere in particular, just “up”), push buttons, literally. She will turn the TV off over and over again. You can get up a hundred times to turn it back on. Say “no” an equal amount of times and the behavior doesn’t change. The only way that we’ve found to stop her is to completely remove her from the room, take her into another room and sit with her for a minute. When we return to the living room, it’s like she could care less about the TV. That solution applies for pretty much all of her “compulsive” behaviors.

To say that my child “puts everything in her mouth”, is an understatement. I know that this can be brushed aside as just a typical child behavior as well but this behavior in toddlers usually stops at around a year old. Babies and young toddlers orally explore as another way to learn their environment. It’s another “behavior” that we can’t seem to control. Because of this, Bella needs to be supervised all the time.

Because of this, we’ve turned our living room into what we call a “safe room”. There is nothing in there that could hurt anyone if tipped over, knocked down or bumped into and every scrap of anything has been removed so it’s not ingested.. Except of course for my beautiful area rug that Bella always wants to pull up. This room also has a baby gate that keeps her from being able to get into the more dangerous parts of the house, like the kitchen and the utility closet. Since she figured out quickly how to unlock the gate, we’ve invested in a stockpile of zip ties to keep it closed. Pennies and loose change, stuffed animal insides, buttons, toy eyeballs from the previously mentioned stuffed animals and pretty much anything smaller than a two year olds mouth has been removed from this room. We even had to go so far as to remove the wheels off any toy cars or trucks and inspect all of the toys in there for any parts that can come off easily. Even with all of this, she still manages to find things to put in her mouth. Of course, I can’t control the outside, so you can only imagine some of the things she’s found out there to put in her mouth.

So, what do you do when you’re child doesn’t understand “no” or “yucky” or even “that will hurt you!”.

We keep a close an eye on her as we can and when we see something going towards her mouth that we didn’t give her, we hurdle over whatever is between us and her and fish it out. It’s gotten to the point now where when she sees us coming, she removes it and hands it out for us. The top of our entertainment center usually becomes “things we’ve taken from Bella.”

We’ve also had issues with her chewing on her clothes, her hair and her fingers. The hair was the easiest. It got to a point where her hair was so long that it was irritating her face, so we cut it. As for her fingers, we used this all natural, “nail polish” that has a very bitter taste to it. It’s used to deter children from sucking their thumb or biting their nails. It worked great, but eventually Bella learned that a few swipes on her shirt (soaked with saliva from chewing on it) was an easy way to get the bitter taste down enough so it wouldn’t bother her anymore.

We’ve tried to explain to Bella that putting things in her mouth spreads germs and it could make her sick. We’ve told her that it could hurt her or that she could even choke on small things. She doesn’t seem to understand us. Either that, or her compulsion to do it is so overwhelming that she can’t really resist it.  We don’t know which it is.

When we notice that she’s sucking on things, we try to persuade her to eat something, or drink some juice. We figure that maybe sometimes, she just wants a different taste in her mouth. This is usually hit or miss. We’ve even gone so far as to give her a baby teething ring to use as a way to keep other things out of her mouth. After a lot of observation, we’ve realized that it’s not just a need to chew or suck on something, it’s more of a way for her to “orally explore” the objects in her hand. She does suffer with sensory processing, so we think that maybe along with her other senses it’s just another way for her to “discover” things.

As we grow up, we stop using our mouths to explore things. We realize that by looking or smelling something whether it’s a bad idea to eat it. I would assume that with Bella’s sensory issues, her other senses don’t do the job they should so she continues to also use her sense of taste to get a handle on what she’s exploring. My only fear with this behavior is that she will one day put something in her mouth that will make her ill, or worst case scenario, she’ll choke on something. It’s because of this issue that I went to get my First Aid/CPR certificate.

As of right now, we’ve found nothing that can stop her for doing this. I don’t know if her mind will ever let her truly stop doing it. I started this blog as a way to share our experiences and to pass along what I’ve learned, in hopes that I could help other people going through the same things. I realize that the people who read this could help me too. So if you have any ideas, advice or suggestions, please know that you are more than welcome to share them.

Thank you.

"Living with an autistic child is a new adventure everyday."

In Her Sister's Eyes

Ever since we found out that Bella had autism, I’ve been trying to find a way to explain it to our oldest daughter. Rayne loves her sister. They have their typical sibling spats, but for the most part, they are inseparable. Seriously, we once tried to give them their own rooms, and they BOTH protested so much that we moved them back together the same night. Bella has a lot of issues sleeping and she would constantly wake her sister up. We thought that Rayne would be happy to have her own, quiet room, but she was much too worried about Bella to enjoy it.

The saddest day I’ve had since learning about all of this came to us a few weeks before Christmas. I asked Rayne what she wanted and she said “for sissy to talk to me.” Her words made me cry because I couldn’t give that to her. Neither could Bella.

Bella has been Rayne’s sidekick since birth and Rayne is very protective of her. We talk frequently about her sister and she is at that age now where she is starting to ask questions. I’m stumped at each turn and I don’t know what to say or how to say it so she’ll understand.

I’ve told Rayne a few times that Bella is autistic. I’ve told her that it makes her brain work differently than hers does. Rayne comes back with typical 3 year old answers. “Fix it” and “get her a new one”. One day Rayne came up with her own explanation that has stuck with me since.  She told me that “Bella was a butterfly who hasn't gotten her wings yet.” I guess this is her way of explaining things to herself somehow. Rayne calls Bella her “butterfly” all the time. When people who don’t know that Bella is autistic, talk to her and ask her questions, Rayne will answer for her. Sometimes she’ll say “she doesn’t want to talk right now” and ask them to leave her alone. I tell her not to say that because it can sound rude, but I know that Rayne is just trying to help her sister.

While I love that they are so close right now, I don’t want Rayne to grow up feeling like she HAS to care for and continually protect her sister. I know that sometimes that can turn from care and love to resentment. I don’t want Rayne to feel left out or overshadowed or feel in any way that she is responsible for Bella.

Sometimes, I find myself just watching them together. Rayne sees the way Cy and I are with Bella and mimics our behavior. She’s constantly telling Bella to be careful. She takes things away when Bella puts them to her mouth. If Bella ever puts something in her mouth, Rayne is right there to tell her to “spit it out”. It goes so far sometimes that I’ve seen Rayne check Bella’s diaper, and even attempt to pour her some juice. Rayne has woken in the night to Bella crying and curled up with her to help her go back to sleep. We’ve seen her on the monitor singing her “Twinkle, Twinkle Little Star”, Bella’s favorite song.

It touches my heart that a child, who’s just passing the 3 and a half year old mark,  can take on such responsibilities on her own. We’ve never asked Rayne to do any of this. If anything we’ve told her numerous times to let Mommy and Daddy do it. She simply says that she “loves her sissy” and she can do it. However, this is the type of thing I don’t want Rayne to grow up and resent.

I love the way that Rayne sees her sister and there is a part of me that doesn’t want her to know that Bella is different. Rayne sees her as being Bella. Her sister. To Rayne there is nothing wrong. The little “stims” that Bella has aren’t strange or odd. To Rayne, when Bella spins, it means it’s time to grab Bella’s hand and spin around too. When Bella lays on the floor, kicking her feet, it’s a reason for Rayne to grab a blanket, cover them up and lay on the floor to watch a movie. Rayne sees her sister though totally innocent eyes that see nothing out of the ordinary. As much as I would love for her to see Bella that way forever, there will come a time when we have to face it all. When I’ll have to tell Rayne the truth, so she knows what is going on. They are both going to be in school soon and that opens a whole new chapter.

I really do wish I could find a way to explain it all, but at the same time, I like the way Rayne sees things. Perfect, nothing wrong. It’s just her sister… another person in her life that she loves to be around. Sometimes, I wish everyone could see Bella that way.

Imagine how blissful it could be if more people saw others the way children see each other.

“An older sister is a friend and defender - a listener, conspirator, a counselor and a sharer of delights.  And sorrows too.”  ~Pam Brown

Happy Birthday

Today is our little girls second birthday. 

We're doing a Tinkerbell themed, get together for her today. She sees the people coming almost every day, so she should be okay with all of that. She loves balloons and we have streamers and most importantly, CUPCAKES. 

I hope she enjoys her day.

"Normal"

I’ve written a lot about the hardships we’ve faced when it comes to Bella. I am no expert, but I wanted to share those issues in hopes that anyone reading this might find it helpful. While we have faced some hard times, I want to also talk about how, to us, Bella is just another little girl.

Bella and her sister, Rayne, have a bond that I think only sisters can have. When we found out about Bella, I was nearing the end of my pregnancy with Gage and Rayne was rounding that 3-and-half year old mark. When I started to notice that a lot of my attention was going to Bella, I started to fear that Rayne would get upset or jealous and we’d be facing a sibling rivalry situation. I won’t lie, sometimes, like any family with more than one child, we do have that rivalry issue. They fight over toys, and who gets to sit in the “comfy” spot on the couch. Who gets to take a bath first, or who gets the bigger half of the apple. You might be thinking that since Bella is non-verbal, she must lose most of these arguments, but she has definitely learned to hold her own. At the same time, they have a connection that I can’t explain. I’ve tried to explain Bella to Rayne in a way that she would understand but I still don’t really know how much Rayne truly comprehends of it. Regardless, Rayne is amazing with her sister. Rayne protects her and helps her and sometimes is the only one that can calm her down. There are many nights when we sit down and watch them on the monitor while Rayne tells Bella these amazing stories when they are supposed to be sleeping. There have also been times when we wake up in the morning to find that Rayne has crawled into bed with Bella to help her go back to sleep. There is a communication barrier between them, but they seem to understand each other perfectly. I once asked Rayne if she knew why Bella didn’t talk to her. Rayne said “because she’s a butterfly who doesn’t have her wings yet.” It might just be the creative words of a 3 year old, but to me, it actually makes total sense.

Bella also takes a great interest in her baby brother. She loves to give him hugs and kisses and even though she may not understand what it means when he cries, she does understand the behavior of crying. She’ll grab the closest stuffed animal and lay it next to him, then simply walk away. Because of her sensory issues, Bella tends to disregard what is around her and will sometimes walk over or step on anything in her path; because of this, Bella does have to be watched closely around the baby, especially when he’s having tummy time. It’s been suggested to us that we shouldn’t let her in the same room with our son, but that is not an option for us. It seems cruel to keep them apart. He is her brother after all. Like everything we’ve dealt with, a little rearranging and a few extra steps to insure everyone is safe is all we really need to do.

Even though Bella is non-verbal, she loves to “sing”. While she can’t sing the words, we notice that she instead sings the melody. Amazingly, she can match the pitch perfectly to some of her favorite songs. We aren’t really surprised that Bella has a love for music. When both of the girls were babies, Cy would freestyle nursery rhymes to them. They loved it. With their father’s background as a DJ, they’ve been exposed to many different kinds of music since birth.  Music in our house is not just something to entertain us, it’s also very therapeutic. Music is universal and something that everyone can enjoy. Classical music has helped us during long nights when she couldn’t sleep. A little drum and bass is always fun to dance around the living room too, and a little bit of whatever is on the radio in the car has helped on long trips when she starts to get anxious.

Along with the music, is dancing. Something else that seems to comes very naturally to Bella. A common characteristic of autistic girls is something called Joint Hypermobility. As the name suggest, it’s a loosening of the joints that make her very flexible. It also gives her poor muscle tone which causes her to trip and fall a lot. However, when she dances, she can remain balanced and perform ballerina type movements rather easily. When she gets a little older, I think that she would benefit greatly from being part of a dance, ballet or gymnastics program.

Bella also loves to tell stories. Even though Bella is non-verbal, it’s clear that it doesn’t mean she has nothing to say. While we can’t understand her right now, it’s quite obvious to us that she is trying to tell us something. She tells these stories with typical Italian hand waving and gesturing and even seems to get upset with us when we don’t react the way she expects. She’s animated and excited when she “talks” to us which gives me hope that one day she will be able to communicate with us in her own words. Maybe not this year, or even next year, but I know that as long as we don’t give up, she won’t either.

There are so many things about Bella that are so normal and average, it would almost be boring to talk about. She plays with toys, she loves to draw and scribble and color. She loves picture books and toy pianos. She loves movies and could watch “Rio” a hundred times in a row. She loves the same things that any typical two year old would love. I’ve said before that caring for a child with autism can get stressful and hectic and downright exhausting, but ask any parent to a child and I’m sure they’d say the same thing. It’s part of being a parent and having a family. We all make sacrifices and we all have to learn a new way to live our lives when we have kids. Some of us just have to learn different things for different reasons.

I don’t want people to look at my daughter and only see her “autism”. Despite what some literature would have you believe, my child is not an “empty shell” and her life is not a tragedy. She’s our daughter and watching her everyday is like witnessing a brilliant painter create his masterpiece. Each day more work is put on the canvas and you can slowly see a work of art forming. That is what Bella is to us. She’s a work of art that is worth every second of time that goes into her. Everyone who has a child has a work of art in the making. You help create the parts that are missing, you help improve the spots that need a little work and for the parts that you can’t change, you learn to accept. No matter what though, you love them.


“"If I could snap my fingers and be non-autistic, I would not because then I wouldn't be me. Autism is part of who I am." --Temple Grandin

They Don’t Speak For Us!

This blog was exceptionally hard for me to write. There will be those that do not agree with me, and that is okay. Everyone is entitled to their own opinion, especially on a topic such as this. I still wanted to share it, but I will warn you ahead of time, it talks about some sensitive subjects. Although these are just my opinions, it’s a huge topic of discussion between neuro–typicals, parents of autistic children, young adults and adults living with autism.

When I first found out about Bella, I did a lot of research online. Some sites might as well have been written in German because I didn’t understand anything it said. Other sites were very informative and helped me understand the more technical side of it all. There was one site that I came across that really just rubbed me the wrong way. Ironically, this site is considered the leading “voice” for autism. It’s called “Autism Speaks”.

In the weeks following Bella’s diagnoses, I read a lot of this site. While there were some helpful links and it did point me in the direction of some other helpful sources, there was something that continued to bother me. It was the way they seemed to portray autism to the public. They had a video posted called “I Am Autism”. After watching it, I actually thought for a moment that maybe Bella didn’t have autism at all. The way they described it sounded nothing like my daughter. The video has since been removed. I wasn’t the only one that felt it mislead people as to what autism really is. I did find the dialog from the introduction and I wanted to share it with you.

“I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live, and guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering ‘who will take care of my child after I die?’ And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake.”

The video goes on to play a woman’s voice saying things like “we will fight you” and “you won’t steal our children”. Now, while I understand the concept of the video, it paints autism in such a negative and demonizing light. I could only imagine other parents watching this video and being terrified to have an autistic child. It fails to tell people that autistic children, when given the proper applied therapies and early education go on to live very fulfilling lives. Some even excelling in certain subjects. (Mostly or fully due to having autism) Instead it tries to make you think that every autistic child is cursed to live a life of nothing but sorrow and heartache.

A quick “Google” search brought up many, many sites attempting to show people that the view “Autism Speaks” takes is not the view those actually living with autism feel or think. These sites are run by amazing young people and adults who actually live with autism or asperger syndrome. So I asked myself, how is an organization that ”speaks” for autism saying something totally different than those who actually live with it?

In another video, titled “Autism Everyday”, a woman named Allison Singer, confesses, in front of her autistic daughter, that she’d secretly and frequently thought about driving her car off a bridge with her child in the back seat. She goes on to say that the only reason she didn’t is because she has a “typical” child at home that needed her. While this is awful to me, it is HER story and she’s entitled to tell it. However, the overall tone of the video implies that EVERY parent raising an autistic child feels the same way. That we all harbor these dark and murderous thoughts. It almost seems to try to justify taking the life of your autistic child to put you and the child “out of all the misery”.

The saddest part to me, is that Singer, after leaving Autism Speaks, opened a sister organization called The Autism Science Foundation. She’s openly stated that she was upset with the choices she was given when her daughter was diagnosed and she wants to give parents another option. Millions of dollars of donated money is spent searching for a genetic tie to autism. The hopes of The Autistic Science Foundation and Autism Speaks is to develop a pre-natal test to determine if the fetus will have autism. One can only assume that the purpose of such a test will function the same way as the test for Down’s Syndrome does. 91-93% of all fetuses that test positive for Down’s Syndrome are aborted. This seems to be the goal of both organizations. As one report put it “Singer seems to use the words “cure” and “abort” interchangeably. They seem to think that a cure for autism is to abort the babies that could have it. Therefore, decreasing the number of children who “suffer”.

This, makes me fearful.

Even if they connect autism to genetics, there is such a wide range of functionality on the spectrum. There would be no way that one test could determine the level of autism in a child. After talking with people who live with autism on message boards and in private conversations online, it’s clear to me that these people are fine just the way they are. They all admit to having social issues and some have more trouble than others with day to day activities, but the overall consensus is the same. They are happy being who they are. They wouldn’t change a thing. I know that this is a fraction of those who live with autism, but with what I’ve read online and the people that I’ve spoken too, it makes me wonder how Autism Speaks is so sure they know what people want.

Is having a child with autism hard. Of course. Things get difficult, and stressful and exhausting sometimes. Would my life be better without my daughter in it? Not a chance. I’m sure that millions of parents out there who are raising autistic children would say the same. While there are those affected with lower functioning forms of autism, statistics show that these children were born with other disabilities as well. It also shows that a majority of autistic children are mid-level to highly functioning and given the right support and services can grow up to lead meaningful and fulfilling lives.

The millions of dollars that these organizations are using to create a test that will end some of these lives before it even starts seems like it could do a lot more good going to improve education and resources for families and children who are already living with it.

There are thousands of autistic adults, young people and parents of autistic children out there who simply want the public to see them as PEOPLE. Not someone that is broken, or damaged or needs to be fixed. I speak for my daughter right now because she can not speak for herself. She’s happy. She sees the world differently than I do. No worse, just different. Maybe that’s a good thing. Maybe we need more people who see the world in a way most of us can’t. Maybe that’s why some autistic children grow up to be amazing people who change the way we live our everyday lives. Maybe this is why I would love to tell “Autism Speaks” NOT to speak for me, or my daughter.

If those living with autism spectrum disorders can accept themselves for who they are and their parents and loved one can accept them, then Autism Speaks is not truly listening to the hundreds of voices telling them they don’t want to be spoken for.

Although Autism Speaks is the most popular organization for autism and they HAVE done some good with raising awareness. There are many other sites that give great accurate information on ways you can help your child flourish. The sooner they receive the services they need, the better. We need to do what we can to help IMPROVE the lives of our children, not find ways to get “rid” of them.

The Autism Research Institute- contains a lot of useful information about autism and the applied therapies and services.

The Doug Flutie Jr. Foundation for Autism-helps families who are living with autism. Throws events to raise money that goes back into the community to help families who struggle to afford services for their children.

New York State Early Intervention Program-An amazing program that helps families and those living with disabilities get the education and services needed.

Kirch Development Services Center-a team of doctors and therapist that assist in evaluating and diagnosing children with all types of mental or physical disabilities.

Aspies For Freedom-a website created and run by young adults and adults with asperger syndrome, autism and all sorts of spectrum disorders. They discuss many different topics and voice their opinions on the way autism is viewed and handled today.

A fathers opinion on what these organization are doing:
"I can only imagine if this test had been created years and years ago. All the brilliant minds that are suspected of falling on the spectrum. All the brilliant minds we have today. None of them would have had a chance to change our world."

Why Is She Doing That?

Imagine pulling a fluffy, fleece blanket out of your dryer. It’s warm and it smells good and you can’t wait to crawl into your bed and wrap up into it. Now, imagine that same blanket, only when you rub it on your face, it feels like sandpaper. When you smell it, it doesn't smell any different than when you put it in the dryer. The warmth of the heat feels like fire on your skin. You would want nothing more than to get it as far away from you as possible.

This is what Bella deals with when it comes to her Sensory Integration Dysfunction, also known as Sensory Processing Disorder. Her senses don’t process things the way a typical brain does. It’s almost as if the wires are getting crossed somewhere and sending the wrong signals to her body. The softest blanket can feel like pins and needles. The cold, hard concrete of the sidewalk might feel like a day on the beach. Clothes can feel itchy and irritating, and even hurt to wear sometimes.

Although my daughter can’t verbally express the way she feels, her actions, with certain things can tell a story. One cotton T-shirt will be fine, but another from the same brand gets ripped off and discarded. She doesn’t mind jeans, but can’t stand the way wind breaker material feels against her legs.

One rather chilly day, as we were taking our family walk down the street, she stopped and laid belly first on the sidewalk. She laid her face against the concrete and smiled. It felt good to her, even though it didn’t seem like it should. That was the day we got our first “What is she doing?” from a passerby.

With sound and sight it’s a little different. When we hear a police siren or an ambulance, we can judge how far away it is by how loud the sound is. She seems to be able to do this, but not all the time. Sometimes a distant siren will do anything from make her cover her ears, to wince and cry. The same goes for light. When it’s too bright, it seems to cause her great discomfort. She loves music and seems to tolerate that at any volume. (That’s my girl.)

The way our senses work together, gives us an idea of our total surroundings. The way that it was explained to me is that she sometimes loses her place in the environment. Meaning, we “feel” where we are. If I’m sitting on a chair at the dinner table, my brain knows that I am in fact sitting on a chair at the dinner table. For Bella, if she’s on a chair at the dinner table, it could feel to her as if she’s floating above the chair, or even the dinner table. Think of the last time you went out and got a little too tipsy. To the point where you needed to hold on to something so you didn’t feel like you were going to float away. That is similar to the way Bella feels all the time. Her constant need to keep moving, the stimming, the pacing and the running are all things she does to stop feeling that way. When she’s moving, she can feel herself move. She can feel where she is in relation to her surroundings. I assume that this is always why she had so much trouble sleeping. It had to be scary to be a kid and be half awake, laying still and feel like you were floating away.

In order to counteract this for her, we generally let her keep moving. When we are at home, she is gated off in our living room (also known as the “Safe Room”). This room and her bedroom are the two rooms in our home where we have removed anything that can be tipped over, tripped over or otherwise result in some kind of injury. She can pace the room for as long as she wants on a clear path. When she sits, the floor is open enough where she can rock, kick her feet or swing her arms without hitting anything. Outside, we chase her and just try to make sure that she doesn’t do anything that can hurt her or someone else. It’s really all we can do until we can figure something else out. We’re not permitted to put up a fence or any kind of containing wall, so our options are pretty limited. The only time Bella is ever perfectly still is when she is sleeping, and even then, she tosses and turns a lot.

We’ve gone through her clothes and had her try all of them on. Anything that got a negative reaction was removed from rotation. Anything that she seemed not to mind went back in the drawer.

All of her toys are “Bella Approved”. Almost everything that Bella touches, she caresses against her right cheek. If it passes the “Cheek Test”, then she’ll play with it. If not, it goes back where she found it and there it stays. If we know that we’ll be going somewhere where it might be noisy, we bring her either earmuffs or a sound canceling pair of headphones. If it’s exceptionally loud, we’ll turn on some music for her to listen too.  We’ve put up curtains in her room that keep out light, so that it doesn’t shock her too much in the mornings. This has helped wonders with her not waking up in a panic as soon as the sun comes up and though the windows. We use soft watt light bulbs in her bedroom and we try to make sure that the TV volume stays low.

The one thing we haven’t had any issues with is actually something that is rather common in autistic children. Textures of food. Some children will only eat certain textures, avoiding all others. Temple Grandin could only eat yogurt and Jell-O. Bella doesn’t seem to have any issues with food and is actually a pretty good eater.

We were told that she may have these sensory issues forever and that there is little that can be done in the long run. It all seemed quit overwhelming at first, but the more we observe and learn, the easier it’s been to accommodate her. Like I said before patience, persistence, consistency and practice. Not just my four new favorite words… it’s a code to live by.

Please. Don’t say that.

I am a pretty open person when it comes to most things. It’s mostly based on the fact that I am socially awkward and never really know what to say. At the same time, I’m just a pretty honest person. I try to give most people the benefit of the doubt when it comes to the questions they ask me about my daughter.

I’ve read a lot of blogs, message boards and chat room dialog, and there are a lot of questions and comments that some parents find offensive. Now, I will admit that some of them, I don’t really understand. I think that a question like “You must have your hands full dealing with that”, isn’t meant to be offensive, but I can also understand how it could be taken that way. I mean, I do have my hands full, but don’t most parents?

In this world of excessive political-correctness, it’s hard to know what is okay and what’s not. Pretty much anything you say can be taken the wrong way by someone.

Any question that seems genuine, is fine with me. If someone comes up to me and asks me what condition my daughter has, I don’t mind telling them. Even if it seems a little random.

But, like the parents I meet on the message boards, I do have questions that I hate being asked too.

Now, some of these are self-explanatory. I think to myself “why would you ever think that’s okay to say to a total stranger”. Some might not be so obvious, so, of course, I’ve added what I usually think or say.

“Why would you have more kids if she is autistic?”

This bothers me for a lot of reasons. Now, for one, we found out about Bella’s condition when I was 7 months pregnant. Either way, the way I see it is I’d rather have a child with autism, than no child at all. I was told at the age of 17 that I would never even have my own kids thanks to a stupid tumor I had removed on my uterus. So having a child with autism would never discourage me from having more kids. My son is awesome and I’m glad that he’s here.

“Jenny McCarthy cured her sons autism with diet change, you should try that.”

Any comment that starts with “Jenny McCarthy” instantly makes my eyes burn. I have nothing against her personally, but I don’t agree with the “information” she’s spreading. It’s been proven, that her son may not have ever had autism at all. Her son suffered from convulsions and seizures, which are both not common with autism. The fact that he is “cured” means that doctors could be correct in their assessment that he had a condition called Landau-Kleffner Syndrome instead. (click here to learn more about LKS) Diet change and vitamins can do wonders for children with that condition and that is what she did to help him. I am glad that it worked for her, but I feel awful for all those parents out there who think that they can “cure” their child’s autism with expensive organic foods and injectable vitamins. I am not trying to be rude at all, but there is no cure for autism.

“You shouldn't have vaccinated her”

This bothers me because of the way it was said. As if I am to blame for her autism because I choose to have her vaccinated. Now, I know that the autism/vaccination connection is a hot topic, but it doesn’t apply to us. Bella suffered with chronic sinus infections and the doctors and I agreed to postpone her vaccinations until she was better. This put her way behind on her shots and she never received the vaccine in question. If someone were to ask me “was she vaccinated”, I’d be more than willing to answer them. Like I said, the way this question was said just makes it sound so accusatory.

“You should just leave her home”

I had this said to me after an event occurred at a playground. After I’d hurdled a swing, a slide and a few children to reach Bella before she put something gross in her mouth. I wasn’t angry at the statement, but I felt the need to reply to this one. I asked her why I would do that. She said “then you wouldn’t have to worry so much and chase her everywhere”. My opinion on this is that when we go out on family walks and trips to the playground, we go as a family. Why would we leave one of them at home? Not only that, but would it really be smart to leave an autistic two year old home alone? That’s sort of a joke, but seriously, we’re all gone.. How and why would we just leave her home? She has every right to enjoy the swings and slide, and like every kid, she deserves a chance to earn her skinned knees and bruised elbows. Every parent ends up chasing their kid around the park and I’m sure all parents worry. We’re no different.

Last, but not least;

When we’re out and we pass by strangers, sometimes we get what most parents do. “Aww, you’re daughter is so cute”. We thank them and they ask how old she is. When we say that she’s almost two, they get a strange look on their face and say “Oh, she’s not talking yet?” If we fell like explaining, we will, but sometimes we just say “no”. I’ve had a couple ladies say “Hmph. I wish my kid didn’t talk!.” It takes everything I have not to scream at them. “NO YOU DON’T”. You get to hear your kid scream and cry and complain, but you also get to hear them say things like “Mommy”, and “Daddy”, and “I love you”. Having a non-verbal child is hard. The communication barrier causes a lot of frustration for both Bella and for us.  I know that this might be said to be humorous or to lighten the mood, but it still bothers me.

There are other things that bother me, but not as much as the ones I listed.

Things like “If it makes you feel any better…”, that one might sound a little petty, but I don't want anyone to make me feel better, I feel fine. And I know that when people say "Oh, I'm so sorry.." that it's also coming from the right place, but I don't want people to feel sorry for me or Bella.  I usually just tell them "Don't be sorry. She's a wonderful kid. We just need to readjust a few things and learn to do things in a different way."

I know that not everyone can understand my situation. I don't expect every person I run into to know every thing there is to know about autism. I know that most of the things people say come from a good place and isn’t meant to be offensive or insulting. Some of the things that bother ME, might not bother someone else. Most of the time, I see the questions as another way to raise some autism awareness.

I guess the point of this post is simply, think before you ask. If you’d find it offensive to be asked, you probably shouldn’t ask someone else. Before you roll your eyes at the lady in front of you in the grocery store because her kid is screaming and having a fit, give her the benefit of the doubt. I won’t lie, I used to be one of those women who would hear a screaming child and think “Geeze, my kid will never act like that!”. Well, now I AM the woman who’s kid is acting like that. It stinks that it took my daughter to make me realize how judgmental I was back then.

Sometimes, I guess, it just takes one to know one.

The Meltdown

The first time Bella had a meltdown, she was around 13 months old. It was the middle of the night. Cy and I, sleepy eyed and tired, tried all the basic stuff. Changed her diaper, made her something to drink. Changed her clothes in case she was too hot or too cold. The crying went from normal tears to uncontrollable sobbing very quickly. We were at a total loss of what was happening and what we should do. I spent three hours that night rocking her in our rocking chair, trying to get her to calm down. Eventually, it stopped, almost as suddenly as it started.

From that first one, it began to happen more and more. Mostly at night. She would go down for bed, but wake up shortly after in hysterics. Sometimes I would just rock her until it stopped, sometimes I’d try to talk to her but mostly I would just cry with her out of sheer defeat. I felt as if I was failing her somehow. I couldn’t console her and I didn’t know how to make her feel better.

A few months later when I started to suspect that she had autism, I’d come across some information on sleep issues in autistic children. It explained that they don’t have a normal level of melatonin, although research isn’t sure why. Melatonin is what regulates your sleep cycles. It tells you when to fall asleep and when to wake up. I figured that it couldn’t hurt to try, and after clearing it with her doctor, we started her on it. After about a week, there was a drastic change in her sleeping patterns. She could sleep for six hour stretches without waking and when she did wake up there was less commotion. She’d go back to sleep easier. After I learned more, I also incorporate a heavy, or weighted blanket on her at night and she wears a weighted vest or backpack during the day. This all helps with her sensory integration and in turn, helps her sleep better.

She still has meltdowns frequently. They happen more during the day now that she’s a little older and sleeping better at night. The only way I can explain it is to compare it to a time bomb. The timer starts, and on her good days, the countdown goes slower, but it never totally stops. When she has bad days, the timer clicks down faster until the time is up…and she explodes. She has her meltdown and then the timer starts all over again.

I want to point out the difference between a meltdown and a tantrum. A tantrum is something that I associate with a child acting out when they don’t get their way. A meltdown is something that happens when Bella is feeling too overstimulated and overwhelmed. When too many things are overpowering her at once. Maybe she’s fine one minute, but the TV is up too loud and the light coming in the window seems too bright for her. There are people talking around her and it all just gets to be too much. All of her unexpressed emotions seem to boil over until they come out in the form of an emotional breakdown where she seems to have very little to no control over herself. It can, however, all initially start with her getting frustrated with something. She keeps trying to get to something that she’s not allowed to get to, and it upsets her. Or she wants or needs something and can’t verbally express it. The more we guess what she wants and the more we get it wrong, the more frustrated she gets. Add that to all the sensory overload from her surroundings and it’s only a matter of time before her timer reaches zero. Now that we know a little more on how to help her through them, they don’t last as long, usually between five minutes to and hour.

There are times when I have to physically hold her tight so she won’t hurt herself or throw herself to the ground. Sometimes I will “burrito” her in a heavy blanket. After a few minutes, when the most extreme part is over, she can handle the rest of her agitation by pacing and crying or laying flat. With a lot of observation, Cy and I have begun to notice when a meltdown is coming. Sometimes simply taking her away from whatever is causing her to feel uncomfortable helps wonders, although it never fully stops it from happening. Sometimes once it’s started, we’ll put her in a warm bath of Lavender Epsom salt. This seems to really help her calm down faster.

She’s only had one meltdown in public so far. This can be harder only because of the people around you who think they are “experts” and feel the need to comment on your childs behavior. I now kind of understand what set her off that day. There were a lot of people and I remember Christmas music playing on the PA system. Beeping from stocking carts backing up, security alarms going off, crying babies, yelling kids. It was all just too much. This one didn’t last very long. Just long enough to get a few dirty looks and a couple of not so subtle remarks. From the outside, seeing a child break down and cry while trying desperately to escape the arms of her mother can look bad… but they had no idea what was going on. You have to ignore it all and do what you know is best for your child. If they benefit from being hugged tightly, do it. Even if they struggle and even if you’re getting the “look of a thousand deaths” from random strangers. If they like you to sing, which Bella does not, cause I have an awful singing voice, do that too. Even if those total strangers, who don’t even have kids, want to tell you that you’re doing everything wrong. You know your child better than anyone else does.

Our goal isn’t to try to stop them from happening, because that’s an impossible goal. Our job is to try to teach her to control them. It’s difficult now since she’s so young, but the worst case scenario will be that if she still has this little control over her actions when she gets to be an adult (or even a young adult). The kind of self harm that adult autistics can do when they’ve never learned to control their meltdowns is devastating. Higher functioning autistics, like Bella, seem to be able to teach themselves ways to handle it as they get older. Until that time comes, we will be there to help her.

Even with all the other issues we face daily, the meltdowns are probably the hardest. Having that little effect on trying to calm and comfort your own child makes you feel like you’re doing something wrong. Patience, persistence, consistency and practice are my four new favorite words. Cy and I have learned not to be so hard on ourselves when we can't get her to calm down.  I still get mad at myself sometimes even though I know that environmental changes help her more than physical comfort. Like I said, the most you can really do is learn what your own child responds better to and be prepared to do it at any given time throughout the day.

“An autistic child’s meltdown can be compared to that of blind rage. Only replace rage with all the other emotions the average person feels throughout the day.”
                                                ~Author Unknown

My Confessions #1

In a perfect world, getting Bella’s diagnoses would have explained everything, made everything make sense and would have answered all my questions. Well, this isn't a “Lifetime Movie” so none of that stuff happened.

I was left with more questions than answers and all I could get from the doctors were averages and percentages. I did some internet searches, but none of it really told me anything. I realized that to learn about autism, I would have to study my daughter. She was the only person who’d be able to explain it to me. Obviously, not with words, but with her actions, reactions and the basic way she functioned throughout the day.

At first, I questioned myself a lot. I feared that others would question me too. Was I strong enough to really deal with all of it. To handle a three year old, an autistic 18 month old and the high demands of a newborn baby. It was very overwhelming and I felt lost. I tried to put on a brave face for friends and family and her doctors and evaluators. I wanted them to think that I was in control of everything. Eventually, I had to admit to myself that I wasn’t. It took me months to accept that and even now, I worry about losing control of the few thing that I have gained a grip on.

I tell myself daily that it will take time. I have to remind myself that I’ve only been the mother of an autistic child for a little over six months. It took me that long with my first baby to really get the hang of all the regular, basic everyday things I was supposed to do. How could I expect myself to instantly learn how to maneuver through day to day life in the matter of a few weeks.

All of the usual things went through my head.
“People are going to make fun of her”
“She’s going to have a hard time making friends”
“People are going to judge her on her condition, instead of who she is”
“She’s going to get left out”

So on and so on. I went as far as to write out all the things I was worried about. I showed them to my husband. He simply said “These are all things that I’m sure all parents worry about for their kids, whether they have autism or not.”  He was right. His very analytical brain was able to see things from another perspective. I think that is what helps us. We see things differently and each have our own take on certain situations. When I can’t figure something out, he’s more than ready to jump in and save me. I, of course, do the same for him. It really goes back to having a great support system. Whether that be your significant other, your mother, your father or your best friend. I’m just lucky because my husband is my best friend and we work well together.

I still worry about things, but I try to focus more on helping her with the things she needs to learn now. I try my best to treat her no differently than the other kids, but I also realize that she is different. There are just certain things that can not be done the same way.

I wish that I had a huge list of tips and tricks and methods on how to handle all the things that parents to an autistic child are in for… but I don’t. I’m still learning myself. So far, we’ve managed to teach Bella to ask for a drink without having a meltdown. Doesn’t sound like much, but we take that as a huge success.

On the other hand, my child has taught us quite a few things. She has shown us the meaning of unconditional love. There are days when she doesn’t want to be around anyone, but will always take a few minutes to come over and sit next to me or put her head on my lap. I see that as her way of saying “I love you” and until the words actually come from her mouth, that is what I will continue to believe. For every meltdown we deal with, there are also hugs and laughter and smiles. Most importantly, for every reason I feel like I can’t handle it anymore, there are ten thousand reasons why she’s more than worth the stress and sleepless nights. She’s taught us the true meaning of being patient and has bonded our family together in ways we’d never know if it weren’t for her. She’s done all of this in less than six months. It makes me wonder what other amazing things she’s going to do tomorrow, or next month, a year from now... five years from now.

I'm not totally sure how to end this blog. I could go on and on with random thoughts on this whole thing... so I'll just say next time, I’ll talk more about how we handle some of the issues we encounter and what we try to do to “help” her.

I want to thank you all for taking the time to read this.

“Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.”
                                     ~Ellen Notbohm