Aetna is Destroying My Life - Please share!

My name is Amanda, and I am Aiden's mom. I am the person behind Aiden's Autism Army.

What I'm about to say is something I never, EVER, thought that I would put out there for the world to see. But I am more desperate than I've ever been in my life. I'm desperate for our story to be heard. I'm desperate for a solution. I'm desperate for stability for both myself and for Aiden.

I've been suffering from severe chronic back pain since 2008, right around the time that Aiden was diagnosed with Autism. I had back surgery on February 29th, 2012 to correct a severe disc herniation that was compressing my nerves to the point that I was having a very hard time urinating. I was in unrelenting, agonizing pain. Every morning I would get up and walk down the hall screaming with each and every movement. I couldn't sleep, couldn't eat, couldn't think, I basically couldn't function. I thought childbirth was bad... Psssh! Labor and delivery was a walk in the park in comparison. 

Surgery relieved the excruciating leg pain and my back actually felt amazing for about 3 months. And then suddenly all of my symptoms came flooding back and a few new ones popped up to keep them company. By the time my symptoms returned I was past the 90 day post op period and my surgeons office no longer took Aetna. So I was stuck trying to search for a new doctor and stuck with pain that I didn't know how to manage. I finally went to my PCP and kept in close contact as I tried to get in with a pain specialist. In July I finally received a phone call from a doctor who could schedule me in September. Done! 

As I waited to see my new pain doc, I was discharged from Physical Therapy due to the instability that remained in my back. I knew at that point, that I was in trouble. And I was right. I had a new MRI done and when my doctor reviewed the results with me, I was stunned. I have a slipped vertebrae, moderate stenosis at two levels, severe degeneration at three levels, three annular tears, etc., etc. It's bad. Doc told me that it's most likely genetic and if that is the case then it would most likely affect my cervical and thoracic spine. I could have surgery but I probably would not walk after. There are no good options. And worst of all, I will never be able to work again. It was a lot to take in and I was crushed.

Aetna who is also my long term disability provider, suddenly and without cause, closed my claim on 09/20/12. So I have no income. You're probably wondering if I have a husband or boyfriend or whatever. That's hard for me to answer, but no. It's just me. Aiden's father left me in June and when I lost my disability agreed to help me with my bills until everything was sorted out. He moved back in because he couldn't afford an apartment and the house. 

The whole situation blew up in my face on Tuesday. It was bad. Really bad. I will just say that Aiden's dad is dealing with a personal struggle. He's not in a good state of mind and I'm the only one encouraging, pressuring, whatever you want to call it, him to get help. He says he will, but avoids ever doing anything to take action.

So here I am. Rent is due next Thursday and I have $25 to my name. Uh oh. I have my health insurance due, I have water, gas, electric, phone, etc. I don't have the frills. No cable. No fancy electronics. The basics. But it adds up to a lot more than $25. 

We wont be homeless. My mom and dad would never let that happen. But it would be horrible for Aiden. He doesn't do well with moves. You guys know how it goes. It's a HUGE change and he has autism. Enough said. It would be exciting at first, because we're living with two of his favorite people, but he would start getting upset very quickly. He will want his space and will get depressed about the losing the house. I know this child. He will regress because of this. :( And my BIGGEST problem is, how am I going to move? I can't even pack, my mom is on crutches, dad works six days a week, and that's about the extent of my support system! How will I pack, let alone move? And my credit. :( I've worked so hard to fix it and now there will be an eviction and a judgement that will stay there for 10 years. It sucks.

It is so unfair that Aetna can get away with this. They are ruining my life! I've provided them with sufficient medical documentation and everything they have asked for. MRI's. Multiple doctors saying I am disabled and can not work. A physical therapist who can't even work with me. WHAT ELSE DO THEY NEED??? They are basing their decision on the opinion of two doctors who have never examined me! Social Security will find a doctor in your area and have them examine you if there is any doubt about your claim. Why aren't the private insurance companies required to do the same thing? They should be held to a higher standard and they need to be accountable for these types of decisions. I have been receiving benefits for a year and they decided they just didn't want to pay out on this claim anymore. Now I have to wait for the appeal. I have an attorney but I'm not too confident in that right now. I applied for Social Security and should have some kind of answer in five months or so. Five more months. Aetna SHOULD be paying me what is mine! My son and I should not have to suffer because they don't want to pay out. I paid my premiums. I meet the qualifications. 

It is wrong that they can do this. I am going to lose my home. My insurance. My access to doctors. My medications. My ability to function. My sanity. They are taking everything from me with no reasonable explanation! Without my medication, I don't see how I'll be able to function at all! Even with strong meds and medication for nerve pain and for muscle spasms, I'm still in a lot of pain. I can't imagine how bad it will be without something to minimize it. 

Again, I don't know exactly why I am sharing this. Maybe you can share this with everyone you know. If it happened to me, it can certainly happen to ANYONE! Knowledge is power and there is strength in numbers. I know that public opinion counts for a lot, and I know that there are people out there who have to relate with me. All I want are my monthly benefits so I can continue to survive. I was struggling WITH income and now I have none. Aetna NEEDS to correct this. 

This is a last-ditch attempt. I know they will pay eventually, but unfortunately if this continues there is no repairing the damage that will be done. Money doesn't fix everything and if we lose our home, it affects my family in more ways than I can even count. I've been praying for a miracle! God is good. I've seen him in action... My prayer is that they reinstate my benefits so that we can keep our home and medical coverage!

I've spent the last few days trying to raise money for the walk on Sunday and it's been a fabulous distraction and I don't know what I'll do when it's over. It's taken a LOT out of me physically, but I haven't had to think about the situation at hand. Now, the big day is almost here and today it hit me hard. Really hard. I have only a few days left until rent is due. I told Aiden that we might have to move this morning and he looked confused. I don't think he totally gets it. I think he wants it to be one big slumber party at my moms house. But it wont be. It will be so hard. It's a small house and I have an eleven year old sister... Ugh. It's just a lot.

Now I'm trying so very hard to put together a small appreciation party for the team. However, I'm in a lot of pain, my mind is distracted, and my house is not up to my expectations. Sorry team - I did my best for you. I'm so grateful to every one of you.Thank you for listening and thanks for hopefully sharing this.

Amanda 

The 4 Most Popular Autism Myths - Debunked!

When Aiden was 2, we both ended up in the ER to be screened for carbon monoxide poisoning after a gas leak in our home. As the nurse prepared to draw blood from Aiden's arm, she suddenly stopped and turned her attention to me.

"Who told you that he has autism? Why would you think that? He's too young to be diagnosed." She crossed her arms and looked at me critically.

"A team of professionals who specialize in Autism." I replied.

"Hmmm. You may want a second opinion because he isn't even old enough to be diagnosed with Autism." There was a long pause. "And," she said very matter of factly, "he makes eye contact and seems to be very affectionate with you. He doesn't have autism."

I was stunned and had to take a minute to gather my thoughts. "Well, I disagree with you. I don't think that you've read the most up-to-date information on Autism. It's not a one-size-fits-all condition!"

As a mom, I spent hours upon hours researching the subject after Aiden was diagnosed. I must have spent two full months trying to understand what had now become a huge part of our lives. It was vital that I knew what I was up against before going into battle. Unless you and your family are somehow affected by autism, there isn't a reason to spend that kind of time researching the condition. It's difficult to distinguish fact from fiction when you aren't given the right information.

There are so many misconceptions and myths about autism that I could probably write a whole book on that topic alone. But lets make this short & sweet. Here are The 4 Most Popular Autism Myths - Debunked:

Myth #1 People with autism don't make eye contact.

WRONG! Aiden is the champion of making eye contact, but it wasn't always that way. Lack of eye contact was one of the first indications that he had autism. He used to be disconnected and oblivious to everything that was going on around him. With time, and lots and lots of therapy, he learned to cope with his discomfort and maintain eye contact whenever it's necessary. Social interaction is very challenging for a person with autism, but many individuals can learn the skills needed to overcome this obstacle. So while inability to make or sustain eye contact is a symptom of autism, it's not a requirement.

Myth #2 People with autism aren't affectionate.

Aiden was not an affectionate baby. He didn't want to be touched, hugged, or kissed. However, he is now one of the most loving and affectionate kids I've ever met. Just this morning, Aiden came up to me and gave me the biggest squishy (Aiden speak for a hug).

"I love you more than cookies and milk." he said in his baby voice. "You're the best mama in the world."

Showing physical affection can be extremely difficult for children with autism. Some are very sensitive to touch which makes direct contact with others very uncomfortable for them. With a lot of time, work, and patience, bonds and affection can be achieved.

Myth # 3 Autism is caused by bad parenting.

No, no, no, no. no!!! As an Autism Mom, this one annoys me to no end. Sigmund Freud believed that almost all psychological issues stemmed from trauma in early childhood. Autism was considered to be a mental illness at that point in history (we now know that it is neurological), and that would make it reasonable to assume that it too was caused by trauma. Even though research has since proved this theory wrong, it continues to haunt those affected by autism.

There are good parents. There are bad parents. There are parents who care too much and parents who don't care enough. Some kids with autism have good parents and others were stuck with the bad ones. Autism is not caused by the quality (or lack thereof!) of parenting, although I'm sure it does have a HUGE impact on how the child progresses.

Myth # 4 Autism can be outgrown.

Autism isn't like a pair of shoes. It isn't something that one can outgrow, but it can be treated and managed with the proper therapy. Some opt to use different diets or medicine to control symptoms, while others rely on therapy alone. Whatever the case may be, autism is a lifelong condition for which there currently is no cure. Although there are most certainly children who appear to "outgrow" their autism as their symptoms recede or change entirely, the underlying condition remains and symptoms can reappear at any given time.

Autism Moms: SOUND OFF!!! Which one of these myths annoys you the most?

The 5 Best Things About Being an Autism Mom (or Dad)

T minus 5 days & Counting 

Every Autism Mom knows that the Autism life isn't all rainbows, butterflies, & cotton candy. Between doctors appointments (neurologists, psychiatrists, psychologists, developmental or nutritional pediatricians, etc.), therapy (ABA, Play, Floor, Speech, Occupational, Physical, Feeding, etc.), and dealing with meltdowns, sensory issues, dietary concerns, learning difficulties, social problems, communication problems, and any other crazy thing that might arise, we don't have much time for ourselves. 

There are days when Aiden is in sync with any other child his age and because of that, life is simple, relaxing, and happy.Then there are THOSE days when he decides to unleash his wrath on anyone who happens to get in his way. THOSE days are filled with anxiety, sadness, frustration, and sometimes helplessness. It can be a very taxing lifestyle and some days I want nothing more than to have a normal (whatever that is) existence. The feeling is short lived and I snap out of it pretty quickly. 

They say that anything worth having is never easy, and that applies to parenting a child with Autism. I wouldn't trade Aiden or this life for anything in the world! Even though it's very stressful, there are some pretty cool things about being an Autism mom. 

Here are what I consider to be the best things about being an Autism Mom:

5) The Holiday Feast - More For Me!

I remember when I was a little girl there was always some kind of argument over the last slice of Pumpkin Pie at Thanksgiving or the one remaining dinner roll during Christmas dinner. Since Autism brought Picky Eater Syndrome along as it's sidekick (they seem to be partners in crime), Thanksgiving and Christmas meals are plentiful. My little man eats the same few foods, over and over and over again and traditional holiday fare does not trip his trigger. I despise Aiden's pickiness most of the year, but the holidays are a totally different story! His pickiness means that there is more yummy food for me... and I'm all right with that! 

4) Vacation Perks That Make Typical Mom Jealous

The last time Aiden's dad and I went to Disneyland, it was a week before Halloween and the place was PACKED! There were so many people that you couldn't see the pavement in front of you. We recently became aware of how amazing Disney is at accommodating children with autism. Simply ask your doctor to write a letter indicating that your child has autism and present the letter to Guest Services. They will in turn give you a pass to make life at Disney a little easier. The pass that you receive is dependent on the disability and level of accommodation needed. This usually means you don't have to wait in line for rides or shows. Cast Members will help you find a quick escape to a quiet place in the event that your child has a major meltdown. There are some pretty impressive perks that you can take advantage of as an Autism Mom (or Dad!) and I recommend that if you have the means to do it, do it! No waiting, escape routes for meltdowns, and Cast Members who are willing to do just about anything to make sure you enjoy your visit. I'll take that over the vacation without the perks any day of the week!

3) Life is NEVER Boring When Autism is Involved

A Saturday morning family breakfast where the entire clan is chowing down on eggs, bacon, biscuits, gravy, sausage, and pancakes.

A one hour trip to the mall with only a little bit of whining from the kids. They stop as soon as you give them "The Look" and the rest of the trip is whine-free and uneventful.

A fun day out with other mommy friends and their kiddos. A trip to the zoo, a museum, or an amusement park.

A monthly romantic dinner date with your honey while the kid(s) are at home with your teenage niece who loves to babysit.

Sounds pretty normal right? Well it's not my normal and I'm guessing that if you are reading my blog, it probably isn't your normal either.

Family breakfast is just breakfast. Aiden eats carbs and dairy exclusively, so it's usually a frozen Gogurt and toast for him and I grab a piece of fruit as we head out the door to get him to school.

There are no hour-long trips to the mall. Whining would be a JOY for this mom. In the whining childs place we will insert Aiden on a bad day: angry, screaming, pouting, kicking, spitting, biting, and when he's in that state of mind, it can last for hours upon hours. Unless the trip is aimed to please him and him alone, I do my best to fly solo when hitting the mall.

Outings are impossible for the same reasons  but it's more painful because the friends with "typical" children relax because their kids are doing as they are told and even though most are hyper, they have self control. On the other hand yours is on the floor, kicking, screaming, and spitting. Becoming upset each and every time somebody diverts from his very narrow plan of action. It's a lonely feeling.

Weekly dates are also non-existent because very few people that I have met are even trustworthy enough to leave Aiden with. Truth be told, I don't think most people would know what to do during a hardcore meltdown.... Heck, there are still times when I don't know what to do when that happens!

These things might  all seem to be negative, but one thing they aren't is boring! And really, it's not so bad. In any one of the situations above I have felt flustered, stressed, and outright crushed, but when I look at the bigger picture it's pretty exciting! I've learned what we can and can not do as a family. And when I think about it, normal would drive me nuts! I'm used to our crazy, hectic, never predictable life! If everything was neat, tidy, clear cut, and wrapped up in a bow I would go insane! You learn to love the life you've been given. Our chaos is beautiful and it keeps us on our toes.

2) TV is an acceptable babysitter hobby for your child

TV is the ONE and only thing that has always worked to help Aiden put an end to a severe meltdown. Even when he was a baby, the only thing that would ever soothe him during a marathon screaming fit was the television. I used to thank God every day for the invention of Baby Einstein! In the typical family, too much TV will "rot your brain" and it's something that many people I know shun. In the autism family, it's necessity. I've had several doctors and therapists agree with that observation - at least in Aiden's case. It can also be used as a learning tool, it can be a bridge that will help you to connect with your child, and it might even help the child link his internal world and the external world together.

1) Autism has made me a better person

I've always had a big heart and had compassion for others, but after the Autism diagnosis, I've grown in ways that I never thought possible. I see the world from a new perspective and am much more open minded as a person. I now can empathize with individuals who have any kind of disability, which ultimately molded me into generous person who enjoys giving to those who are less fortunate than myself.

Aiden has helped me to see that speaking is not the only way to interact  with people. In fact there are many other forms of communication that can be much more powerful! He has opened my eyes to details in the world around us. Details that I would have overlooked before. Details that make this world a more beautiful place to live in.

Autism has made me realize that life is not about the tomorrows, but is really about the todays. Today's successes. Today's accomplishments. Today's victories. Tomorrow may be a continuation of success or it may be full of failures and regression. As an Autism Mom, you need to be prepared for ANYTHING, because the Autism Train can be one wild ride! We should focus on our child's strengths and celebrate our child's achievements religiously, no matter how big or small. Things change from day to day when Autism is involved, and that's exactly how we have to live our life. Day by day. You can plan your future finances, your future career goals, but you can not plan the future for a child with Autism. I do my best to enjoy the beautiful moments of today and hope for more tomorrow, but I go with the flow and take life as it comes.

Autism has helped me to find patience. Patience that was buried so deep down inside of me that I didn't think it existed. Autism has helped me to become the person I always wanted to be. Sure, there are times when I am envious of parents who have their typical kids and their typical lives, but if I ever was given an opportunity to switch places, I would have to politely decline. The Autism life can be crazy, but it's now what I call home.

I'm dying to know YOUR 5 favorite things about being an Autism mom! Please follow our blog and share your Top 5 in the comment box below!

Army to Be Deployed

T Minus 6 Days & Counting...

In a few short hours, only 5 days will remain until Walk Day! Aiden's Autism Army is preparing to be deployed to Balloon Fiesta Park on Sunday October 28th. 

In honor of our success meeting both our fundraising and recruitment team goals for the 1st Annual NM Walk Now for Autism Speaks, we will be starting a very special 5 day series.

Our official Five Days of Autism series will begin tomorrow and run daily from October 23rd - October 27th. We will be asking for your opinions, feedback, and stories over the next few days... please take a minute or two to comment and if you're feeling REALLY nice, please follow our blog! 

T Minus 6 days and Counting!

I Walk...

I walk for my sweet Aiden.

I walk because I love you more than words can ever say. You were my precious little surprise. The piece that was missing from my life. When you came into the world, I was complete for the very first time. I never knew how empty my existence was before you were born, You, my little miracle, are everything I never knew I always wanted.

I remember the day we brought you home from the hospital. After you were born, we spent twelve agonizing days waiting for you to come home and when the day finally came, we were elated. Daddy drove about 25 mph the entire way, raving about crazy drivers the whole time. At long last, we arrived. Once we were inside of our apartment, Daddy set your car seat on the floor and we stood there in silence for a very long time, just staring at you. I finally confessed to your Dad that I didn't know what to do now that we had you home. We had waited such a very long time for this moment but once it arrived, we were clueless.

Turned out, I had nothing to worry about. You and I settled into a comfortable routine and I was amazed at the intensity of the love I felt for you. I would spend hours just holding you in my arms. I would stare at your tiny little fingers and toes. Your perfect nails were so tiny and thin! I would run my fingers very softly over your face, memorizing the slope of your nose and the curve of your chin. Your beautiful eyelashes were long, dark, and thick and when you would open your eyes after a nap, they would bat wildly and your lips would purse. You were the most perfect creature I had ever laid eyes on.

I walk because I know how painful it is to hear the words, "Your child has autism." When you were diagnosed at the age of 2, my heart broke into a million pieces. I had already known in my heart for quite some time, but hearing the words was something I could have never been prepared for. My world came crashing down as I began to see a future that was completely uncertain. I had the dream, as every mother does, that you would have a blissfully happy life complete with a thriving career, a beautiful family, and a dog frolicking in the backyard. When you were diagnosed with ASD, it felt as if my dreams for you would never come to fruition. 

I know now, that you are every bit as capable as you were before the diagnosis of fulfilling those dreams... possibly even more so. The future is still filled with uncertainty, but I can give you the tools and skills that you need to overcome your weaknesses. I can support you and love you and teach you how to be an honorable, hard-working man.The rest is up to you, my precious son. 

I walk for families living with or affected by autism.

I walk because I want other parents to feel the hope that has replaced my despair. There will still be plenty of days where it all seems to be too much. Days when the realization that your child has autism hits you all over again and so does heartbreak. The tribulations will sometimes outweigh the victories, and there will be times when you are moving backward even though you desperately want to be moving forward. Just know that triumphant moments lie ahead. Live in the moment, savor each victory, and continue to strive for the next. Every victory, no matter how small, is the fuel that will keep you going.