Bella says "I ♥ You" (video)

A huge milestone that I've been waiting months for. Today, Bella said "I love you".

Again, her words are not super clear, but you can tell what she's saying.

It's a wonderful feeling knowing that all the hard work we're doing at home, and her teachers are doing at school, seem to be working.

We are so proud right now.

Thanks for watching!!

A Buddy For Bella

We are currently on the tail of a few organizations that will help us get a therapy dog for our daughter. We are thrilled with the news, but also know that we’re not going to be able to afford a dog from any of these organizations without reaching out for help.

Around the house, we’ve been calling this whole thing “A Buddy for Bella” or “Bella’s Buddy Fund”. So, I guess that’s what we’ll call it. It fits and pretty much explains it all.

We are currently in the VERY early stages of planning a benefit that will help with the costs of acquiring the dog, the training of the dog and the travel expenses involved with actually bringing the dog home. Currently, we have two choices:

Find a suitable dog that fits the criteria and send him out to have him trained with basic and advanced therapy training. It’s cheaper than option two, but still quite pricey.

Option two is to get approved  through an organization that supplies the dog and the training. After getting approved, signing all the paperwork and making our “donation” (payment), the puppy will be picked out and trained by their people and we will be kept updated. This process could take up to a year to complete.

We are highly considering option one simply because it’s cheaper and it doesn’t take quite as long, however, the training will be more specific to Bella’s needs if we went with option two.

We’re currently in the process of playing email tag with a select group of therapy dog organizations.

Our idea right now is find people who would like to contribute something that can be raffled off, or sold. Just to get an idea of what we have to work with in the future.

Again, this entire thing is in the very early stages, but we are looking for ideas. So feel free to leave a comment here, email me at a_buddy_for_bella@yahoo.com or message me on Facebook.

Thank you all so much.

It Costs To Care

Maybe the most frustrating part of… well, living, is money. You need it to survive and for most of us, it seems like you just never have enough of it. The feelings that some people have towards money is the definition of a love-hate relationship. One person can hand you a fifty dollar bill and expect nothing in return while another will give you five bucks and remind you every single day that you owe them.

Now, I love that Bella’s teachers have taken such a liking to her. I get paperwork from them all the time with great advice and different things we can try at home with her. Unfortunately, the last couple months, the paperwork just makes me wanna scream. They send me these amazing ideas, these things that make little blue birds fly around my head tweeting “hallelujah”… that is, until I read the fine print.

Seriously? These organizations are great, but, where do they think we’re hiding our secret money tree?

I know, I know… money is a touchy subject. Not too many people like to talk about it and some people believe that talking about money with your friends is a flat out “no-no”, but whatever. Truth be told, we’re not rich. I know, you’re surprised, but we’re just your average family, with average income.

The common cost of raising a child with autism these days is about $800 more a month than caring for a neuro-typical child. This includes doctor visits, therapies, applied behavior analysis, advanced treatments, medications, travel expenses, direct non-medical and direct medical costs.

These figures were conducted in a study in 2003 so these prices may be much lower than they are today.

Then of course, we move on to the “other” stuff, like the rainbow in our sometimes cloudy sky; the autism therapy dog. The newest advice we received was a day camp that she could attend that uses advanced therapies for her speech issues. Yup, you guessed it, NOT free… of course. A couple grand for four weeks during the summer.

Don’t get me wrong, please, I think that what all of these great people do with kids affected with autism is amazing. They deserve to have their time rewarded. I just wonder how the parents feel when their children have to miss out on these wonderful opportunities because the price is just too high.

I think a bigger question here might also be, “Why doesn’t our health insurance cover SOME of these treatments”. Most of the time, autistic children only get the speech, occupational and physical therapies they need because those services are offered free. But what happens when those free classes are full and there are no spots left. Those parents either have to find a private therapist and pay out of pocket, or their child simply goes without. The average cost of out of pocket therapy? Between $300 and $1500 dollars EACH per month (sometimes per session!). If you have to self-pay for something like applied behavior analysis, it will run you between 20 and 30 thousand dollars a year.

Believe it or not, there are actually a lot of doctors and health care insurances that are raising the prices for autism treatments simply because they know that parents need them. It’s a pretty selfish way to make a few extra dollars, but that’s what happens when something is in demand.

I’ve made dozens of phones calls over the last few weeks, regarding the slight chance that we might be able to figure out how to get Bella a therapy dog. When the question comes up about payment, none of these places every say the words “the dog costs…” it’s always referred to as a “donation”. One woman openly admitted that she prefers to call it a donation so she doesn’t feel bad for taking so much money from families that are desperate for the kind of relief they’d get from having one of these dogs in their home. While I appreciated her honesty, I couldn’t help but feel a little duped. I almost wanted to say “Well, at least it makes you feel better, your “donation” is roughly the down payment on a house!” The ONLY advice they give you is to start fundraising, now! Some people, I was told, can raise the money in a few days. Others who don’t have a large social group of friends and other people willing to help spread the word, take much, much longer.

I’ve talked to our insurance company as well. At first, just to see what WAS covered, but she might as well of emailed me a list of the stuff that wasn’t covered. Basically, besides regular doctor visits, nothing. Anytime Bella has to go to anyone other than our regular doctor, we have to get a referral (which can take between one and two weeks). We’ve had almost 15 medical visits denied by our insurance only to resubmit them, wait a couple more weeks and have them denied again. I begin to wonder what the point of medical insurance really is.

Hopefully, sooner rather than later, insurance companies, doctors, schools, etc. can all catch up. Kids NEED these early interventions. These therapies can literally change the lives of those affected by autism and many other disabilities.

I’m sure if society can argue and make a huge stink about certain semi-cosmetic surgical procedures being covered on even the cheapest of insurances, these life changing treatments can find a place on the agenda.

Right?

Hate Mail

Hate Mail

I started this blog to give me a place to get my thoughts out. To share my stories and to hopefully help, even one other person who was going through the same types of things that I was. I knew that by opening myself up, I would eventually face some kind of adverse backlash. I’ve gotten a lot of email over the last few months. The majority of it is nice. Kind words, honest questions and great advice. Unfortunately, taking in the good leaves you open to undoubtedly receive some bad.

It started out small with a random email every now and then. I couldn’t tell if it was from the same person or not. I’ve mentioned before that the ladies I speak with online are harassed daily by a group of internet trolls who think that it’s funny to  send hateful emails to parents of disabled children. Why they do this always eluded me, but I’ve recently found out that, while some of them may just be trying to rattle some ones cage, the majority of them truly believe in the things they say. They really do think that our children would be better off “if we’d decided not to have them”. In the emails they send, they seem proud of themselves. They seem like they would stand behind their words as solid truth and stick up for their right to say it until they were blue in the face, the only thing that contradicts everything they claim is the fact that they send the emails anonymously and are too cowardly to even sign their real names to their ignorant words.

The latest email, I will admit, got to me a little, but not in the way that the sender intended. I can’t repost the email in it’s entirety simply because the language is offensive and there are so many spelling and grammatical errors that it makes some of it total gibberish. Out of the whole four paragraph tirade, only one was actually directed at me and other parents.

(PLEASE EXCUSE SOME OF THE LANGUAGE I AM ABOUT TO USE… these are NOT my words)


“…people like you make me sick. You just walk round with retarded kids so people will feel sorry for you give you money and so you can get attention. You and other bleeding hearts have to get it in your head that they are barely even people. They practically soulless and do nother but scream cry and mess stuff up. It war your choice to keep it so why should I and everyone in public have to suffer for your choice by hearing your kid scream and have tantrims and knock stuff off shelfs at the store. You wan people to believe that they have feelings and can love but they can’t. You just want them to. These people are nothing but a burden to the people they end up with. The eat up money time energy and leave nothing for the other people in ther family. If I ever had a retarded kid I would refuse to take it home from the hospital. There is no way I would give up my life and dreams to the maid of a mindless kid that would suck up all my energy and I get nothing out of it. You are not a martyr no matter how much you want people to think you are. Retarded people just end up in homes when the get old enough then become a burden to the state and the taxpayers who have to pay for them. I shouldn’t have to pay for your kid. The retarded people cost millions of taxpayer dollars and you don’t even care because you “love it”. Survival of the fittest would mean that your kid shouldn’t have survived and hundreds of other useless people who will never do anythign to help society. Hop your happy.”

(my auto-correct actually changed a lot of the spelling mistakes, but this is ALMOST word for word. I had to edit a few lines that didn’t make sense and cut out some of the more offensive words)

Like I said, the email wasn’t signed and the address it came from led me to a website where most of the people posted anonymously. I REFUSE to put a link to this place on my blog, but if you google “I hate my autistic sister/brother” you can find the sites these people use. Based on what I did find, this email could have simply been sent from a teenager who has a disabled sibling and is feeling resentment towards them. Taking it out on someone else is common. However, after I read just enough to make me angry, I noticed that some of the people commenting weren’t siblings, they were just hateful people who think that if another person isn’t exactly like them, then they just don’t understand how they could enjoy their life and function at all.  It’s repugnant the things they say and what’s worse is that they really believe in the things they think they know. Their information, not just about autism, but about a lot of other disabilities is so grossly incorrect it’s almost shocking. (and on a slightly less serious note, their grammar, spelling and sentence structure is wildly close to that of third graders.) I’ve sat on this email for a about a week now going back and forth from incredible anger to sheer amusement. See, I’ve dealt with my share of bullies. Very few people really know what I dealt with in school. It took me a really long time to see that these people that harassed me everyday simply had nothing better to do with their time. They spent a lot of their waking hours thinking about me. The only thing that I really regret about it all is that a lot of people back then didn’t get to see the real me. They got to see the version of me that had been beaten down from years of verbal and emotional harassment. However, I did learn to always try to see the positive in any situation that comes my way and this is no exception.

What I realized from reading these emails and the things that they say on these websites is that they simply aren’t strong enough to handle what I (and so many other mothers) deal with on an everyday basis. When you make the conscience choice to have a child, you can’t predict what could happen. There is no test that can tell you that you’re child will have autism. So by the time you find out, you’re child is already nearing two years old. A parents love for their child is unconditional, so if you find out they have a disability at two years old, you still love them AND you do what you can to help them. It’s not perfect and the days can be hard, but a child is not a faded sweater or a toaster that doesn’t get as hot as it did before… you can’t just return it for a new one because you don’t like the way it’s working anymore. These people, to me, are saying that they would refuse to raise a kid with a disability because they couldn’t… not because they didn’t want to. They don’t think they should have to put some of the things they want on the back burner to give their children what they need. Well, to that I say, you’re definitely not ready to be a parent. ALL parents have to sacrifice things for their kids. Most of us know that when we decide to have them. I would tell them that they are selfish and cowardly and based on the things they have no problems admitting to,  don’t deserve the honor of being a parent or having a child with special needs. I don’t think I’m a saint or a martyr, but I also know my child isn’t soulless. I would tell them to do some research and educate themselves because the things they think they know about disabilities make them seem pretty damn stupid. Lastly, I would tell them that if they have a problem with me, my kids, my family or my friends, they can find a good position behind me and kindly kiss my ass.

And I would at least have the stones to sign my real name.

How Do You Discipline An Autistic Toddler?

“She needs more discipline at home!”
“You spoil her too much”
“She needs a good spanking!”
“She just has a bad temper”
“She’s out of control”

All things we’ve heard a lot over the months, mostly by family (before they really understood, and some by strangers who just made a snap judgment while witnessing a random ten second meltdown). ALL of these statements do not apply.

I know that a lot of Bella’s behaviors can be seen simply as temper tantrums and acting out. Unfortunately, it’s not as cut and dry as that when it comes to dealing with a  child with autism. I am in NO way making excuses for her. Trust me, I’ve observed her enough by now to know when she’s reacting out of frustration, and when she’s just being a typical two-year-old.

Most parents, when their child is misbehaving, can put them on time out, or threaten to take away a beloved toy. Sometimes, simply the tone of a serious mother’s voice can turn their child’s behavior around. Unfortunately, Bella can’t distinguish facial expression or tone of voice. To her, it all looks and sounds the same.

While I do not condone spanking, and don’t see it as an effective way to discipline ANY child, I read that physical discipline is the LEAST effective way of disciplining an autistic child. Regardless of how lightly you spank, to a child with autism, especially those with sensory issues, a “simple” spank can feel excruciatingly painful, OR, they can act like they didn’t feel a thing.

So, getting the point here… just how do you discipline a child with autism. Well first thing you have to do is change the definition of discipline.

“Webster” defines discipline as “the practice of training people to obey rules or a code of behavior, using punishment to correct disobedience”. When you have an autistic child, it should be more like, “the practice of teaching your child to obey rules or a code of behavior, using easy to understand methods to help improve your child’s way and quality of life”.

Communication
Autistic children have a lot of issues with communication whether they be verbal or non-verbal. They are very literal thinkers and thrive with the structure.

• Use simply but very clear language when you give your child instructions. If you use sign language with your child, sometimes it helps to make up your own signs. Use visual cues or, if you’re child can read, write it down for them. 
• Try to use positive requests. Instead of saying “Stop climbing on the couch”, say “I’d love it if you’d stay off the couch”. Knowing that you’ll be happy when they are on the floor might give them the encouragement they’d need to avoid climbing on the couch. 
• Create a daily schedule in a way your child will understand. (pictures, simple words, signs) and hang it up. Before each activity, show them what they are going to be doing and what comes next. Structure and daily schedules can really help keep the day going well. It may not curb ALL the restless behaviors, but it does help. 

Social Interaction
Understanding social rules, having their personal space invaded and being forced to participate in social situations can all cause anxiety in autistic children. They also have a lot of trouble interpreting the feelings and emotions of others.

• Flash cards. Honestly, one of the only things we've been able to do with Bella to help her with this, is to create flashcards of different faces showing different emotions. It’s been proven that children who are exposed to these types of therapies have an easier time as they get older when it comes to social interaction. 
• Try to interrupt unacceptable social behavior and guide your child to an acceptable one. It’s harder than it sounds, but it can be done. For example: While at the park, Bella started to try to undress herself. I stopped her from doing it and immediately took her over to the slide. I kept telling her that when we’re at the park, we go down the slide. She tried to undress again that day, but I just kept doing that over and over. Before we left for the park the next time, I told her a few times that we were going and that when we’re at the park, we go down the slide. That day, her clothes stayed on. 

If your child has issues with routine changes, it’s a good idea to warn your child ahead of time of what you’re going to be doing. We don’t have too many issues with Bella when our schedule changes except on the weekends. She’s not used to her father being home in the mornings because he’s usually at work during the week. So when he’s at home, she seems confused, but also doesn’t want to leave his side. When Cy started going to classes a couple months ago, he left even earlier, and that she did have issues with. For a few weeks, when he wasn’t the one who came to get her in the morning, she would be very upset. It took a little while for her to get over that, but the moral of the story is, she DID eventually get over it.

Things to Remember
When you have an autistic child, most of their behaviors, seen as good or bad, most likely serves a purpose. It’s important to try to figure out what their behavior is trying to tell you. Once you can identify what you’re child needs or wants, it will be easier to determine what certain behaviors mean. When you do that, you may even be able to eliminate the undesired behavior all together.

Autistic children don’t do things “to annoy you” or “to test your nerves”. If you’re child is doing something that you see as them “trying to get your attention”, it’s not because they are doing that typical child “look at me” dance. Most likely it is because they NEED you to look at them because they want something.

Behavior Services (speech therapy, occupational therapy and physical therapy), role playing and modeling appropriate behaviors can all help. We’ve noticed that since Bella has been taking speech therapy, her frustration level throughout the day has improved greatly. We’ve also been able to figure out what a few of her behaviors indicate, so we can give her what she’s asking for and avoid the behavior completely. Bella is still completely non-verbal, so there are still days when we can’t figure out what she’s asking for, and she still gets very frustrated and anxious.

Last but not least, one of the most important ways to correct a behavior is to make sure that it’s not something medical that’s causing it. It might sound odd, but a recent study showed that more often than not, at least half of all autistic children (mostly non-verbal) go a very long time with undiagnosed issues stemming from stomach problems to sleep apnea. All of those undiagnosed issues can negatively effect your child’s behavior. Bella has sleep issues and stomach problems. She wasn’t sleeping much at night, so she was going through the day in a very bad mood which only went to cause her to get frustrated much faster and act out much worse. She still doesn’t sleep well, but she sleeps much more than she did before, and in turn, her patience has at least improved.

There is no secret remedy to improve an autistic child’s behavior. Like so many other things you’ll learn to handle, this is just another thing that comes with the territory. It takes patience, understanding and lots of trial and error. Eventually, you’ll find a common ground with your child and you’ll both learn to communicate with each other better.

Take advantage of the classes and therapies offered. The more you do now, the better your child can adjust and the better their life will be as they grow up and learn to handle things on their own.

The Good, the Bad and the Ugly

I’ve been asked a lot if I could explain what a typical day is like here in my house. I always reply with “it depends on what day it is”. While that sounds like a humorous way to pass off an uncomfortable question, I’m actually being quite serious. There are some days when someone from the outside could come over and not really know that anything was different in my house. Then there are days when they would swear that the spawn of Satan has rented out my spare room. I say that all lovingly, but there are those days when we find our heads bobbing just above the water. We try to stay positive, but sometimes, there just is no silver lining. Sometimes, it just downright sucks.

On A Good Day
Bella is the epitome of a perfect child. Despite the fact that even on her best days, she’s still unable to be still. On those days, she’ll calmly pace around the living room. She may even sit on the couch for a few minutes at a time. Those are the days when she wakes up with a big smile on her face, she comes over to us (on her own) and she’ll wrap her tiny arms around our legs. She’ll eat! She’ll dance to every second of music she hears and besides the random bouts of incoherent “talking”, you won’t hear a peep out of her. She’s quite loving and will come over to us many times a day to kiss us or hug us and she’s less destructive than normal. We have these types of days maybe once a week. The rest of the days are between what we’d call a Good Day and a Bad Day.

The worst days are just plain ugly.

On A Bad Day
Bella will wake up in an “off” mood. You can tell that the day isn’t going to be the way you’d like it. How bad the day is all depends on her. When we start out with these kinds of days, we like to put her in a Lavender Epsom Salt bath. The lavender has a calming effect and it really does seem to work for her. On these types of days, she’ll pace the living room, but she’ll be much more agitated. She’ll seem anxious and nervous and we’ve noticed that she stims a lot more. Constant spinning, finger flicking, rocking and toe walking. She’ll be more sensitive to sounds and bright lights and you can just tell that she’s heading for sensory overload. We’ll take her into a quiet, darker room and sometimes just lay down with her. The quiet helps. I’ll do deep tissue massage to help her calm down and we make sure that she stays hydrated because during these anxious times, she refuses to eat. These are the days that make me feel bad for many reasons. I think I still blame myself for Bella’s condition. I also feel torn between being there for my other children and knowing that I have to watch Bella constantly in order to keep her safe. I feel that the other two kids do get time taken from them because Bella needs so much attention. Then, I see Rayne and Bella playing together and I realize that if Rayne doesn’t seem too upset by it, then I shouldn’t beat myself up. For a three and a half year old, Rayne seems wise beyond her years and almost seems to understand that Mommy has to help Bella a lot. Despite the constant movement and pacing all day, she still seems to have trouble sleeping at night. It takes a long time for her to fall asleep, and she never stays asleep longer than a couple hours. These days are closest to what we could call “normal” days.

On the REALLY bad days, dubbed “Ugly Days”, nothing is safe. Couch cushions will be removed, area rugs over turned. Food will fly and drinks will spill. Books will tear, paper will rip, magazines will becomes two halves of a whole. There will be times when all you want to do is sit down and enjoy a cup of coffee, but she will want to use you as a jungle gym, and no matter how many times you set her back on the floor, she will relentlessly climb right back up. Bella will move, all the time, either in place or all around. She will walk circles around whatever is in the middle of the room. She will pinch herself, every now and then, I guess as a way of proving to herself that she IS there.  She will climb on everything and knock whatever is in her way down. If you have something that she wants, she will try to take it. If you deflect her advances, she will get very frustrated. These really bad days, we get very little affection from her, no eye contact and her verbalization is frantic and loud. She’ll fight being touched, dressed, fed and held.

These are the days, I feel like crying. For her, for me, for the other kids and sometimes even for my neighbors who I’m sure can hear her at night when she’s refusing to go to bed.

These are the days when, as a mother, I am at a loss of what to do. When Rayne would cry, I would pick her up, hold her, rock her and tickle her tears away. With Bella, none of that helps and in some cases makes it worse.

I try my best not to feel sorry for myself. All I ever wanted was a good man to spend my life with and kids. I have that now. Having a child with Autism isn’t exactly something you think about when you’re thinking about your future self, but this is the hand I was dealt. To say that I don’t feel overwhelmed sometimes would be a lie. I do. I’m sure Cy does too, but to be honest, we don’t really have time to feel sorry for ourselves. If we did that, I could pretty much guarantee that in that time, Bella would make her way to the top of the entertainment center and toss all the BluRays on the floor. (Yes, that’s happened before. We moved the coffee table out of the room.)

The other big issue that we have with Bella’s disciplinary problems is that she’s so freaking smart! It took her less than a day to learn how to open the baby gate. Two days to learn that if she tossed all the pillows and blankets on the floor, she could climb out of the crib and drop to the floor unharmed. Three HOURS to figure out which way to stack up all her toys so she could climb up them to the top of… whatever she was trying to climb to. She watched me unhook her carseat buckle ONCE, and knew how to unbuckle it. Every latch, hook, clip, buckle and snap has been modified to be “Bella Proof”.

So, how do you discipline an autistic toddler?
Well… I guess that’s something to write about next time.

Graphics Share! pt.2

Today is National Autism Awareness Day. Show your support by posting a wall post, or changing your profile picture just for today. 

Support Autism Awareness

Advocate Acceptance!

Graphics Share! pt.1

In honor of Autism Awareness Month (and National Autism Awareness Day on the 2nd), I spent the last week or so making some graphics to bring attention to Autism.

Feel free to use them however you want. 

Save to your computer (right click and save image to your computer). Upload it as a wall post to Facebook! Use one as your profile picture on April 2nd to show your support for Autism Awareness. 

(They'll be a second batch coming tomorrow!)

I hope that you all like the graphics and choose to share some on FB or any of your other social networking sites. 

Spread Knowledge, encourage acceptance!