Wednesday, February 18, 2015

Special Needs and Medical Insurance Bureaucracy. Ain't Nobody got time for that?!

It goes without saying that being a parent of children that have special needs, comes with a little bit of chaos, a whole lot of love and quite a bit of patience. And for the most part we try to simplify things as we know that just trying to get out the front door is a bit of circus. But when it comes to the services and medical support our children need, there is no skipping on the necessity of having things done that is helpful for us and our children. Most of us don't ask a lot. Just that places are respectful to our children's needs.

It has gotten lately that our children are not seen as persons, but numbers. Whether it be clinical numbers or insurance numbers. Our children's livelihood are now at the hands of big time medical groups and insurance. It makes me wonder, just how much is my child's life and it's complications are worth? Again, I am nothing more than a lowly military special needs blogger who puts out personal stories of my life and my children's. But nothing hits home more when you know your child is being discussed as number, instead of their person. I get that these places need to make their revenue. But at what cost?

Ever since my daughter was diagnosed with Autism, some six years ago, it has been quite clear to me, that no matter how hard I have to fight in the medical insurance arena, she is still just a number. That point was driven home like a stake to my heart, when my son was diagnosed with a genetic disorder. Being told that certain aspects of his care are not covered. Now I get that with Tricare, there is red tape everywhere on things, especially with genetics and behavioral services for some reason. But I would love to know who at any of these insurance companies just sits back to figure out what is covered and what is not. But all this BS does not make things simpler for us who already have a somewhat chaotic life.

Most of these people who work for these companies have never once had to face the harsh realities that most of us, families have had to. And I am willing to bet that if even one thing they need in order to survive is denied, there will be hell to pay. Never will they have to go through a day making phone calls after phone calls trying to get a damn authorization code on a referral for an appointment their child has in less than 24 hours. Or even have to argue with staff who treat you like the number you are given over co pays or even worse, be told that since your insurance didn't get back to us, this appointment for this specialist, that you have been waiting for, for months, is now going to be out of pocket. And you MIGHT, might be reimbursed for the cost. So despite being the care-taker for a person who has special needs, who has time for that? The answer is no one. Because by the time you have gotten to your appointment with your child, you are so damn exhausted you have reached your limit of being nice. Being calm. The sad part is, is that most of these big time medical centres have a department for just insurance. That is all they do.. claims. And the insurance companies have a department that just deals with referrals. Now if you, yourself can pick up the phone and call someone about a referral, what can't the people who are paid to do just that, do the same? Simple right?

I, for one, am tired of the medical bureaucracy. I am tired of the amount of bullshit to get something very simple done in regards to my children. Something has got to give. I am very thankful that once I get past all of this bureaucratic bullshit, medically my children are supported. But to get through to the other side of this wall? Well Ain't Nobody got time for that. We just want to see our children get the medical services they need in order to survive.

Friday, February 13, 2015

" Momma, what did I do wrong?"

" Momma, what did I do wrong?"
" What do you mean?"
" What did I do wrong to make people not like me?"
" You didn't do anything wrong. You are a kind,lovable child. The right people see that. Its the wrong ones that do not."

This sadly was a conversation I had with my 9 year old daughter, who is on the spectrum last night.

I can't tell you how many times it breaks my heart to have a conversation like this with my autistic child. A child that doesn't understand the social sphere around hers. I see her trying to understand. The gears and emotions turning inside that little head of her. Trying so desperately to understand the why and the how of things. And for any parent, it can be hard to stand back and let our children face adversity to make them learn a lesson that will help them into adulthood. That not everyone is going to like you. It doesn't matter if you are the perfect cup of tea, there will always be that one person who will find fault in you.

But this lesson is hard for those who don't pick up on the social cues given to them. They start to internalizing things. They start to think that there is something actually wrong with them. All those insecurities of why can't people see me and like me, plague them. They start to be ashamed of themselves, when there is no need. That self confidence and self esteem plummets. And as parents, we watch as we see our child become shells of themselves. I understand that rejection is a way of life. And even for some adults, its a hard pill to swallow.

I read an article this morning about how to be a friend to a person with autism. It was a fantastic article. But something resonated with me. How about how to be a friend in general. Everyone has their quirks. Everyone. How about trying to look past what makes a person different. I know I preach that more times than I want to admit. But its the sad truth of it.

I watch as my child is rejected and pushed away. Told no or be told that she isn't the desired person other children want to play with. I watch the hurt that comes across her face. As she might not understand the reasoning behind the rejection, the emotion is still there. I get that she is a somewhat shy child, and that some times play isn't what other expected, but she is still a child. A child with feelings. A child that often gets her feelings hurt. I think that people forget that. That just because she understands the world differently, that she is somewhat immune to it all. Guess what, She is not. She takes it all in.

For most of her life, she has lived in the shadow of her more outgoing brother. My eldest is the social butterfly. He is the buffer. But he is also a brother that was my daughter's voice when she didn't have one. He is the brother that tries to include her when she is pushed away or when he sees her by herself. Now that she is coming into her own, she is being more vocal about how she feels. The joys, the sadness and the times she is angry. Which as a parent is a blessing to see. But with that blessing comes watching the whole wide range of emotions she is discovering.

Teaching children to be kind isn't a hardship.It isn't like trying to teach a university level physics problem. Teaching them to be aware of the growing world around them isn't a hardship.

No parent wants hear from their child that they think there is something wrong them because others can't accept them for who they are.

If this lands me in trouble, remember I am advocating for my children. As I don't think any one of you would like to have the conversation with your own children that I have had with my child on why society won't accept them. And trying desperately to make her see that she is worth someone's time.

Wednesday, February 11, 2015

No I won't back down

In the words of a certain Tom Petty, I won't back down.

Here's the deal, yesterday thanks to people who can't get along with the rest of the world, a fellow military spouse blogger was targeted. Her page and her twitter account were hacked into by a certain group, who's name honestly sounds more like a brand for a woman's douche than a fear mongering, US and it's allies hating bunch of people. Thus putting all of us who are military that blog on high alert.

 The question was asked, "Why would they target blogs and pages of military spouses? What would they gain by doing that?"They did it to rattle our feathers. Get us to quake in our so called boots. Try and demoralize our military. They wanted to show us that even through the lines of social media that they can still terrorize us. The message got out that we needed to lock our stuff up tight, tighter than Ft.Knox. I know that a good portion of us really take the time to work on the stuff that we put out there. We are proud of the writing we do or the information that gets put out. As we should. So what right do people have to take that right away from us? The answer is they don't. It is the perfect example of terrorism. Reeking havoc on those to get them to bow down. Whether it be domestic terrorism, International, cyber. Its all a form of terrorism. To make people have a sense of terror about something.

As things were happening around me yesterday, reading from my computer about the attacks on social media, as I tried to figure out what was the best plan of action , locking up my accounts and closing up shop, it dawned on me, this is what they want. They want us to bow down. They want us to be demoralized. They are trying to take our voices away. THEY want us to be afraid. But guess what? I am not going to stop doing what I like to do, in order to satisfy their wants and needs. Yeah I am just a lowly blogger at the end of a very large totem pole. I am just one voice out of millions. But that one voice can stand on a mountain and be heard.

After 9/11, we lived in this constant fear of everything that might have the intention of being a terrorist plot. It was a witch hunt to find those responsible for the 2nd international attack on US Soil since the bombing of Pearl Harbor. Understandably. And through the years since we have shown our strength as a Nation to overcome that fear. To show the true power that you will not back down is to show that it doesn't affect your life. Is it going to hinder us? Yes. I think back to seeing pictures of WWII Britain and France. Those people faced bombing upon bombings. Air Raid sirens and the destruction of towns. But in the face of all this, those people kept on going. The biggest "FU" they could give to Hitler, was to carry on. Live life. Through the rubble. Through the destruction. He never took away the fighting spirit. God knows he tried.. But never did he succeed.

So when we get attacked either on our own soil, foreign soil or cyber soil, it make me want to talk louder. It makes me want to write more. As I will not let them overshadow the message or the work that I have done for my people.  So no I will not back down. You can tear me down, I will only build it back up. As many times as needed.

"Well, I won't back down
No, I won't back down
You can stand me up at the gates of hell
But I won't back down

No, I'll stand my ground, won't be turned around
And I'll keep this world from draggin' me down
Gonna stand my ground and I won't back down"

Tom Petty and the Heartbreakers- I won't back down

Thursday, February 5, 2015

It truly is a small world after all..

I wasn't going to enter the Vaccination ring. I actually swore to myself that I wouldn't but there are certain elements that keep dragging me back into this vicious ring of rotating assumptions, generalizations and the worst kind of comments.

Now, anyone that reads my blog or follows my page on facebook, knows I am a very open minded person. Whatever your style of parenting is, that doesn't bring harm to yourself, your children and the outside world is fine by me. I don't care if you are  bottle feeders, breast feeders, cloth diapers vs disposable ones. Circumcised or not. I honest don't care.As none of those choices, impact my life. None. But the same can't be said about the choice to vaccinate or not. As that does have an impact on not only my life, but my children's.

Since"Vaccinationgate"has been opened, yet again, thanks in part to the person who brought Measles to "Its a Small World After All", I have been asked on several occasions now, what my stance is on vaccinations, since I have two children that are on the spectrum. Vaccinations did not cause my children to have autism. One, is that one of my children has a genetic disorder that exhibits Autistic like qualities. My other child, showed signs well before the "dreaded" MMR shot was given to her. Now I know that thanks to Dr. Wakefield and a certain McCarthy, we have now have a nice little hysteria going on concerning vaccinations. Now before anyone gets on my case about McCarthy, I will say this about her, she did help make sure vaccinations were more stable. Other than that, I don't take advice from someone who clearly doesn't have a MD at the end of their names. And even with that, I still always do my own research. As not all Doctors are created equal.

Now I am all for clean vaccinations. They should be at the highest quality any medication given to a person should be. But it has been clearly documented over and over again that the vaccinations given are just that. I am a hardcore do your research kind of person. Not the whole Web MD thing, but anytime I have medication given to myself or my children, I research the shit out of it. Pros, cons, side effects or is this a good match for myself or children. When I do my research, I do it with an open mind. Yeah there are going to be sites, that lambaste medications. But I look further. I look at the number of people that have benefited from it. How many people has this helped feel better? I have done the same for the vaccinations my children have received. I look at the disease itself. Measles, Mumps, Pertussis, Polio and the countless other ones that are on my children's Immunization Card, and I think what would the world be like if one person just stopped caring about those diseases? If that one person was me? Your answer is in third world countries. The countries where things like small pox and polio are still raging. Listening a mother describe how her child died a death that was preventable puts things into perspective. As no parent should have to watch a child die from something that can be stopped. Seeing pictures of my parents and grandparents generation in Iron lungs is something I would never want my children to have to endure.

I know that people have their reasons for not wanting to vaccinate their children.  The quality of vaccinates, the idea that they are not needed, the threat of autism and or developmental disorders or even the rare chance that person is allergic to a vaccination. With all that is out there to debunk those myths, the science behind it all, that has proven, that vaccinations don't cause autism, that they are needed to prevent the spread of diseases or that the quality of them has gotten better and even the slight chance that someone would have an adverse reaction to any one of them, we still don't see how that one choice can effect those around us.

A child or an adult who is battling any form of Cancer can't have vaccinations, nor people who have certain auto immune diseases, are they supposed to live in a bubble? What about their livelihood? Its not fair to them if they are living in constant fear of getting something that is preventable? But yet that preventable thing can kill them.

I am not writing this to shame parents. I am writing to inform. For the week or so, it has been a non stop debate. At times it has turned political and even worse racial. We all want what is best for our children. There isn't a doubt in that. But I think most of us have to ask ourselves, is this choice going to impact the lives of other people? And if it doesn't, well go on about your merry way. But if it does, all I ask is to educate yourself. DO more than the basic research. Look at statistics. Does this benefit society or not. And if it does and it helps the greater good, then that is your answer.

Sadly, the Disney outbreak has proven that it truly is a small world after all. And with in this small world, one choice affected a good number of people.

Sunday, February 1, 2015

The Sheer joy of a Party..

There was nothing more enjoyable than watching my daughter a dear friend's birthday party the other day. Watching her handle herself and just be herself. Not worrying about what people would think about her hand flapping or conversations with herself. In fact, the other little girls at her craft table thought the way Little Miss made her craft have a conversation was pretty cool. So they started talking to their crafts. When it came time to eat cupcakes, we discovered that Little Miss wasn't the only one who didn't like sprinkles. It was about having fun. And she did just that.

Most of us can remember a time when we were children, the sheer joy of being invited to a birthday party . It meant that there was at least someone who liked you enough to want you there to help them celebrate their special day. Sometimes it often feels like a popularity contest. Now to a lot of us, not getting invited to a party is no big deal. But for a socially awkward person, who doesn't quite understand why, it can be hurtful.

Just as I have a son that loves balloons, I have a daughter that lives for birthdays. Hers, mine, her siblings.. doesn't matter. Celebrating birthdays is her thing. She is the little girl that the day after her birthday is already planning her next. Its not a vanity thing for her.. Its the sheer joy of being around people who have come to help celebrate something. Its one of the few things that gets her amped up.

For her it doesn't have to be much, but to feel included. I can tell when I pick her up from school the days she has an invite to a party in her backpack.. As she is screaming across the street most times " I GOT INVITED!!!" Or when we get an evite to something, she is over the moon with delight.

Now I am not saying that everyone needs to be invited to things. There are just sometimes where it isn't going work. I get that.  But I think it does hurt her when people who she thinks are friends talk about the parties they have all been to and yet again she is left out. I also understand that my child is unique. She is one of a kind, Little Miss. And like everyone, she has her quirks. I get that some would see her hand flapping as disruptive or that she sometimes has conversations with herself, personally we don't find it disruptive,as its just part of who she is. Just like your child might not like the sprinkles on a cupcake or a certain topping on a pizza.But regardless, she simply enjoys being part of a celebration.

She doesn't ask for much. But the one things that makes her feel good about herself is that she is accepted. That she is welcomed. And that she has people who will love or like her for who she is. They can overlook the things that make her different. See what we see, a girl that simply enjoys being around people who accept her.

I guess just like everything else, I wish people would see past the differences. That all they saw was this little girl who is so desperate for friends that treat her right. As I watch her grow and mature, I see that people aren't always accepting of her quirks. That sometimes she is overlooked. When all you want to do as a parent is just state, what your children are missing out on, when you pass her off. You miss out on a kindhearted child. She is funny and loves a good laugh. She loves to sing and dance, even when she doesn't know the steps or the words to the songs. She is also just a little girl who thinks birthdays should be celebrated every day.

For children with Autism and other developmental difficulties, don't count them out because you are afraid of how they  will act. Count them in as children that are just children who want to be part of something. Experience what every other child is experiences. I know that inviting a child with special needs might require a little extra work. But think about it this way, in order for us parents to provide our children with the same amount of enjoyment over a party, we still have to plan for them as well as the children that come our birthday parties. We accommodate for everyone that is invited.

So that all being said.

The Little Girl that absolutely believes that every day should be celebrated,with glitter, balloons, cake, who doesn't care if it is your birthday or not, she believes that you should be celebrated and accepted. There are days where I wish the rest of the world could see and understand her spirit.