So this is Christmas...

I'm dreading Christmas for the first time in my life.

I never thought I was capable of feeling this way, but as the reality of my future becomes more clear, I wish we could just skip Christmas all together. The last few years of my life have been hell tough, to say the least and I'm hoping that what is about to transpire is the grande finale. I'm beyond burnt out.


For the past two weeks, even with my own problems looming in the distance, all I could think was that  if I'm struggling this much, then there has to be other families in the depths of despair. Other families like mine. You know. The Autism Families who are struggling financially. :) And all I could think about was helping THEM. How many families aren't going to have gifts to put under the tree on Christmas Eve? It absolutely breaks my heart to think that there are kids who are going to wake up on Christmas morning without any presents.  If they are like Aiden and believe in Santa with all of their heart, they are going to be devastated when he somehow forgets to make that stop on Christmas Eve. And then last night I realized something. Aiden is about to be that child. :(

This will be the first Christmas since I became a mom that I am broke and unsure of where Aiden's gifts are going to come from. Even worse, I find myself once again scrambling to try and come up with the money for December's rent and as we began decorating for Christmas this weekend, all that ran through my mind was that if we get evicted, it's going to be heartbreaking to have to pack up our entire home... and all of our Christmas stuff before Christmas even arrives It's times like these that I wish Santa Clause was real... he would be extremely useful in this particular instance.

God blessed me greatly when he chose my mother to be the person who was responsible for giving birth to and raising me. She always, always, always made Christmas the most magical experience for my sister and I. Even when my parents were struggling financially and had nothing to spare, they always found a way to get gifts under the tree. The Christmas gifts that Santa left were always abundant... my mom has a knack for transforming seemingly insignificant things into something wonderful. When I had Aiden, I vowed to give him the same experience that my mom gave to me.

How in the world did I get here? I worked so hard to be where I was, and take care of Aiden the way that I was able to.  It's all slipping away and it's devastating. I feel like I'm just watching it happen in slow motion.

When I became disabled in 2011, I had just been promoted to a position that every girl in my industry dreamed of having. I loved my job more than almost anything, but dealing with a special needs child and my own chronic condition for over three years had taken a toll on my body and the demands of my career had become more than I could handle. My work began to suffer and everything at home began to suffer. So I made the choice to go on Short Term Disability which transitioned into Long Term Disability. My back continued to worsen and I had no choice but to have surgery in February of this year. I was in agonizing pain and I couldn't care for myself, let alone my child.  Just to show you how much pain I was in, check out the picture below. I had to sleep like that EVERY night for an entire month because I couldn't sit, stand, lay, NOTHING! It was awful.

February 2012 - 10 days before surgery

After surgery, my excruciating leg pain was gone, but my back problems remained and actually became worse. I couldn't even complete physical therapy because my back was so unstable. I started to see a new pain management doctor, who after evaluating me and reviewing my MRI's and records, said I would more than likely never be able to work again. That same day, my Long Term Disability provider called me to say that my claim had been closed and I would no longer receive my benefits.

This was a HUGE problem for me being that Aiden's dad left us in June. I was able to get him to pay our rent last month, but for December he is refusing. My electricity and gas are two months past due and I pray every night that they don't get shut off. My phone is past due. My water is past due. Everything around me is crumbling and I am helpless. 

All I can do now is trust that whatever happens is what is meant to happen and roll with the punches.

I am praying for a Christmas miracle and am asking for you to pray as well! There is power in prayer and I am begging for your help! 

I don't want to put Aiden through this right before Christmas. If I don't pay rent, we'll have to be out the week BEFORE Christmas. Which means packing up our trees. Our decorations. Our everything. I can't help but think it will be traumatizing for Aiden. To take all of his magic and wonder and pack it away in a box right before Christmas seems cruel. And the biggest issue of all is the Autism factor. We all know how DETRIMENTAL sudden change can be for our kids. It provokes uncontrolled anxiety, confusion, and disregulation. If we have to leave our home, especially in this manner, it will mess Aiden up for months. 

Over the summer Aiden had a severe episode of regression. He was extremely violent and was obsessed with death (this was triggered from my dad having a severe heart attack a few months prior), and life just was becoming a living nightmare. Nothing I did helped. Aiden wanted nothing to do with me and was so full of rage. I injured my neck and re-injured my back restraining him from hurting himself and his old behavioral therapist. He finally began to improve a few weeks into this school year and has been doing amazingly well since September. I don't want to EVER be back in that element again and I fear this move might trigger another round of violence.

And then there is my back. To pack and move is physical labor. I can't lift more than 5 lbs without ending up crooked and laid out for weeks. My Grandfather was seriously injured this past weekend in a FREAK accident (his car exploded and he sustained 2nd degree burns to his face and hand) so the entire family is trying to take care of him, which is very difficult. My mother just had foot surgery, my father has enough stress and is a survivor of sudden cardiac arrest so we can't put too much on him. My sister has a bad back and the list goes on and on. I'm on my own and I am not capable of doing it. Even if I manage to pack up, where will I store my belongings? I have no money for a storage unit.

So this is my sad story. I don't want you to feel sorry for me. I'm not asking for pity. I've been handed the life that I have for a reason and I truly love it and embrace it. Even the not-so-good parts. But I have learned that when you need help you have to ask for it.

I need your help. I need your prayers. I know that God will take care of Aiden and I if I remain faithful. But as I said earlier, there is so much power in prayer. And there is power in numbers! Please pray that Aiden and I are blessed with a Christmas miracle! A roof over our head. Food on the table. Presents under the tree. All of the things that my amazing little boy deserves just as much as every other child! Christmas should be a magical experience for every single girl and boy! We transform into grown ups way too quickly, and the magic of Christmas gets lost. Kids should be able to enjoy it while they can. So all I'm asking is that you take one minute of your time today to pray that Aiden will have a magical, beautiful Christmas. 

Thank you for taking time out of your day to be a part of my life.

Merry Christmas!

~Amanda~

All Star Autism Moms: Courtney Barnum

Courtney Barnum

Wysox, Pennsylvania

Courtney and Liam

Courtney Barnum, 33, of Wysox, PA is this weeks All Star Autism Mom! Courtney is the woman behind the very successful Facebook page, A Legion for Liam (ALFL). I received a nomination from Courtney's husband, Pat, that was short and very sweet.  Here's what Pat had to say about his wife:

Hi. My name is Pat. My wife Courtney runs A Legion for Liam. She is an All Star Autism Mom! She works very hard to care for our son, and to take care of me (disabled after major back surgery in April). She carries a lot of weight on her shoulders, and she always put others first. Please give my wife the recognition she deserves.

Thank you,

Her "Hubs" Pat & Liam

I was nearly moved to tears when I read this email. I was impressed by Pat's recognition of Courtney's hard work and dedication. Having had major spine surgery myself earlier this year, I understand the burden it can place on a spouse... especially when you throw a special needs child into the mix. A Legion for Liam was already one of my favorite pages on Facebook - I love Courtney's upbeat attitude and creativity- so choosing her to be featured this week as an All Star Autism Mom, was an easy decision.

This All Star Autism Mom grew up in Wysox, PA with her parents and sister. They later moved to a smaller town, Wyalusing, PA. When she was 16, her cousin (who she refers to as her brother) came to live with her family. Courtney says that her family "Puts the fun in dysfunctional" and stresses that even though the fun loving clan didn't have a lot of money, her parents never let the kids go without.

Courtney met Patrick (who she calls "Hubs") through mutual friends when she was working as a bartender and it definitely wasn't love at first sight.

"I didn't like him at all!" she laughs.

However, his funny, sarcastic nature, and friendly disposition, eventually won her over and the pair moved to Alabama in 2005 and tied the knot. The couple started their journey together and though Pat had 2 children from a previous relationship, they wanted to start a family together. Courtney had always wanted kids, but that turned out to be easier said than done. She suffered 7 miscarriages and was told that she may never have a successful pregnancy before Liam came into the world.

"Liam is truly a miracle." the proud mommy gushes. "God gave me Liam and my chance to be a mama!"

Here's everything you ever wanted to know about this AUsome mom!

What did you do before you became a stay at home mom?
Ha! I have done it all! I worked at a convenience store, managed a Dollar General, worked at a daycare, was an Office Manager for a Pediatrician, I made diapers at P & G, was a bartender, and a tattoo artist.

What is Liam like? What are Pat's kids like?

Liam is 6 years old and he is crazy! He is funny, energetic, and smart. He is witty but sometimes he doesn't know how to joke and people don't know how to take him. Pat has 2 other kiddos. Shelly is 20, and Branden is 16. Shelly is pretty quiet, but has her dad’s sense of humor. Branden is more like his dad. In fact, pretty much a spitting image. 

How did you feel when you finally became a mom?
For me, becoming a parent just felt natural. Though it’s the hardest job I have EVER had (and lets face it, I’ve had a lot) it’s also the most rewarding.

What was it that made you realize that Liam was different?

I knew from the get go! As a newborn he was up EVERY hour on the hour, crying. He didn't have colic, but he never slept. Hubs and his two kids all have ADHD, so I assumed Liam did as well.

Before Liam, did you ever know anyone with autism and were you familiar with the condition?

YES! I worked in a Peds clinic and there was a boy who was nonverbal. I knew right away that it was autism. I didn't really know much about autism, but I knew enough to know that he had it! I thought that most of them were nonverbal. I knew that they flapped their hands and that they were pretty smart, but that's all I knew.

When did you start to become concerned about Liam's development?

At 15 months Liam started to change. He had reached all of his milestones on time, if not early, but at 15 months he started to back pedal. He would let NO ONE touch him, hold him, or love him. He would scream like we were killing him. He would go to no one. It broke my heart.

What led to Liam's diagnosis and how did you feel about it?
Liam was a late diagnosis. When he was in Head Start, he barely passed his EI (Early Intervention) evaluation. Hubs and I didn’t want to segregate him, so we didn’t opt for EI to step in. He did good as he is very smart, but he wouldn’t play with his peers. He would only play with his teachers. His speech was very dutchy too. Head Start expressed concerns of ADHD, so we paid a visit to his doctor. He didn’t agree that it was ADHD and told us that it was behavioral,.. that it wasn’t AUTISM. At that point we didn’t think it was either, and I was really upset. We started searching for a doctor that would really listen to our concerns. Finally ,we got him in to see a Pediatric Psychiatrist and at 5 years old he was diagnosed with Aspergers. We were blown away. I cried for days, then pulled my head out of my arse, and started looking at how we could help him. We took Liam to a new doctor and he diagnosed him with mild Autism. He loves Dr. Dan Edmunds and so do we. We trust him so much and are so thankful that we found him!

How did your family choose to treat Liam's autism?
Liam received speech therapy for a year, and just graduated last month. He was diagnosed with SPD (Sensory Processing Disorder) by an Occupational Therapist, but because his fine motor delay wasn’t severe, she couldn’t treat his SPD. The GFCF (Gluten-Free, Casein-Free) diet was a pain, but we did notice changes in his behavior and attitude. To be honest, it was too much for our family to afford. Now I merely limit his Gluten.

How did your friends and family react to Liam being diagnosed with Autism? 
Family was and is very supportive. Most of our friends are too. The ones that aren’t are no longer our friends. I think it’s hard for many to accept that Liam has Autism. He looks like every other kid, and yes, he’s super smart. It seems that many think his behaviors are bad, not realizing everything that goes along with Autism.

What were the 6 months after diagnosis like for your family? 

It was a whirlwind! At first I cried a lot, then I became proactive. There were many changes. We now had strangers coming into our home to work with Liam.

How has your family been changed by his diagnosis?

Liam really hasn’t changed. He knows he has Autism. He calls it his superpower. I have become stronger. I have learned that I need to fight for what Liam needs and deserves, and I don’t back down anymore. My family has become closer. We rally around Liam and his needs.

What motivated you to start ALFL?

I started ALFL in April of this year because I wanted a place where I could share our life. I wanted a place where other parents could come to vent, share, laugh and cry. I wanted to be there for other ASD families.

What do you like most about running ALFL?

The response! I never expected my page to reach so far. It really hit home when I was saying everyday what I am thankful for, and someone said that they were thankful for me. It made my day! It makes my heart swell to know I am helping others.

What advice would you give to the parent of a newly diagnosed child?

Don’t back down. Trust your instincts.

What is your favorite way to spend time with Liam?

Snuggling, and reading. I love to read to him. I also love when he gets in my bed at night and we have our “talks”. Sometimes he tells me silly stuff or talks about his current obsession.. Other times he talks about his inner most feelings, and that means a lot to me.   

What is your favorite thing about being an Autism Mom?

Being part of such an extremely strong and resilient group of other Autism moms. I feel like we are a sorority of bad butt chicks that are NOT to be messed with.  

Do you think they'll ever find a cure for autism? 

No. I don’t think they will. It is different for every child and I don’t see how they could pinpoint one cure for all. I know my son doesn't have severe Autism, so my thoughts on this may differ from other moms, but I wouldn’t want my son “cured”. I don’t feel he is flawed, and therefore doesn’t need a cure. I feel this is Liam. He is different, he is quirky, he is special. I love him just the way he is. If his Autism was taken away, he wouldn’t be Liam.

What are your hopes and dreams for Liam?

I hope that he grows up and goes to college. I hope by then he is able to be in social situations without freaking out or getting upset. I hope that he becomes whatever he wants to be, and I know he will be great! Part of me hopes that he will continue to advocate for others with Autism. To be a voice for those that aren't heard.

Your best motherhood moment?

My best in being in sync with my child. I always know when he is sick, and 9 times out of 10 I know what is ailing him. I can read my son like a book and I understand him better than anyone.

Your worst motherhood moment?

My worst moment, and I am being totally candid here because I don't expect anything less from people in my life, was when Liam was having a rough day and I couldn't take it anymore. I started to scream at him and cry. He said, "Mama! You need to go to the doctor and get some happy meds because you are being mean!" At that moment, I broke down. I sat behind the wheel and bawled my eyes out in the car. I immediately made an appointment. That afternoon my doctor told me that my anxiety was through the roof, and I was put on Zoloft. I have been a better person and an even better mama since then.

What are your hobbies? 

Art. Anything artsy/craftsy. Before I was a mom, I was a tattoo artist.

Any cool accomplishments?

I was in a TV commercial for the tattoo shop I worked for in Alabama. The paranormal team that I am a part of (EMP) was asked to host Paranormal Night at a Binghamton Mets baseball game. That was fun!

What makes you tick?

Ignorance and intolerance. There is no quicker way to make me mad.

You have an entire evening alone. How do you spend it?

Ha ha ha! IF that happened, I would spend in taking a nice hot bath in my Jacuzzi tub, a glass of wine, and a good movie.

Mama Courtney & her precious Liam share a kiss.

Just For Fun....

Favorite Color: Pink.
Favorite Holiday: Christmas and Halloween.
Favorite Food: Chinese.
Best Restaurant You've Ever Been To: The Golden Corral, my addiction while I was prego with Liam.
Disneyland or DisneyWorld: DisneyWorld, my dream is to go there before Liam is too old to enjoy it!
Autumn or Spring: Autumn, I love the smell of the leaves!
Morning or Night? Morning person
Chocolate or Vanilla? Chocolate all the way!
Fast Food or Home Cooked? Home cooked, I love to cook!
Coke or Pepsi? Dr. Pepper (candy in a bottle)
Biggest Weakness: Socialization. I get very nervous and awkward feeling when I am in big social situations. That’s why I love Facebook. I am shielded by my laptop!
Is the glass half empty or half full? Almost always half full, but I do have days when it's empty!
How many licks does it take to get to the center of a Tootsie Pop? I wish I knew because Liam asks me all the time! I can’t wait and bite into it after a few licks 
Favorite way to pamper yourself : Wine! Painting my nails. 
Drink of choice: COFFEE or iced tea

Visit Team Bradley on Facebook: ww.facebook.com/ALegionForLiam

**Are you or someone you know an All Star Autism Mom?**

If so....

Message us on Facebook and tell us your story! We will feature one All Star Autism Mom every Wednesday and you could be next! 

All Star Autism Moms: Amy Huizenga

Amy Huizenga

Jersey Shore, NJ

Amy Huizenga of Jersey Shore, NJ is our first All Star Autism Mom, and it's very easy to see why! Amy and her husband Richard formed Team Bradley in 2011 in honor of their son Bradley, who was diagnosed with autism only one year earlier. Team Bradley has been wildly successful raising money for and participating in their local Walk Now for Autism Speaks. 

Amy grew up in Upstate New York with her parents and younger brother. In addition to her younger brother, Amy also had three older half siblings. Amy loved children and always knew that she wanted a big family. She met her future husband Richard in Florida when the two became study partners in law school. They married in 2007 and started on that big family that Amy had always dreamed of. They are now the proud parents of four beautiful children and a 160 lb Bull Mastiff named Louie. Their oldest son is 5 1/2, Bradley is 4 1/2, and their daughters are 2 and 3 years old. 

I was thrilled to get the chance to interview Amy who is, in my opinion, the picture of an All Star Autism Mom. In addition to raising four children, Amy runs the Team Bradley Facebook Page and recently started The Team Bradley Book Club. This Autism Mom has made a commitment to helping families living with or affected by autism and that is why she is our very 1st All Star Autism Mom. Here's what Amy had to say:

What are your kids like?

They are all so different and have their own unique personalities, likes and dislikes. They are all sweet, funny and loving. 

What was it that made you realize that Bradley was different?

He was always “very Bradley” We really didn’t have much experience with kids other than his brother, so didn’t really know if they were just different kids or if there was something wrong. We had some concerns that we mentioned at his 2 year old well visit at the pediatrician and he failed the MCHAT (Modified Checklist for Autism in Toddlers), so she referred us for an Autism Evaluation.  

Before Bradley, did you ever know anyone with autism and were you familiar with the condition?

No, I didn’t know anyone and didn’t know anything about it.

How did you feel when Bradley was diagnosed with autism?

It was devastating and scary but we just started moving immediately, doing everything we could for him.  

How did your family choose to treat Bradley's autism?

He immediately started Outpatient Physical Therapy, Speech Therapy and Occupational Therapy. Through Early Intervention we had Occupational Therapy and Developmental Intervention.  

What were the 6 months after diagnosis like for your family? What things changed? What stayed the same?

We started having therapies in our home and driving him to therapy 3 days a week. 4 weeks after diagnosis we had our 4^th baby and we then had 4 kids under 3 and a half. 4 kids in diapers. Our baby had severe acid reflux, too. It was a hard time. Plus, I was reading tons about Autism and Sensory Processing Disorder so I could understand my son and how to help him.

How has Bradley changed since the diagnosis?

He has come so far. He can verbalize things that were causing him stress that we had no idea about before he could talk. He has come a long way and made great progress.

How have you changed?

I have changed a ton. I look at everything differently, seeing the world through my Autism goggles, assessing every situation ready to fix and/or handle it. Although Autism is unpredictable, I do my best to be ready. 

Has it changed the rest of your kids?

Our kids are all so young, that he's just Bradley to them. 

What advice would you give to the parent of a newly diagnosed child?

Do every therapy you can. It takes time and a lot of work by everyone but it does help. Read and learn everything. You need to know what people are talking about before you can help your child. It is impossible to effectively take part in therapies if you don’t know what is going on or you can’t recognize a problem. Focus on and celebrate strengths!

You've had amazing success raising money for Walk Now for Autism Speaks. When did you get involved with the organization and what drew you to them?

In 2010, after Bradley was diagnosed, we walked with a team from the hospital where he gets outpatient therapy. I was amazed at all the other teams there to support kids. I wanted Bradley to have that support too. Rich and I talked about it that day and we left there knowing that was what we were going to do the following year.  

What are your fundraising and recruiting goals for Team Bradley next year?

I hope to raise more than this year, which was almost $6000.00. I also want to have more than the 72 walkers we had this year. I just want to grow each year. 

What is your favorite thing about being an Autism Mom?

Meeting the other amazing Autism Moms (in real life and online) because they are the only ones that truly ‘get it’.

What are your hopes and dreams for Bradley?

That he has self confidence and finds what he is good is and excels at that, whatever it may be. And that he know how much we love and support him in everything he does.

What are your hobbies?

Reading, cooking, and working out.

Any cool accomplishments?

I completed Tough Mudder Pocono Manor in May 2012.

First three words that come to mind when you hear the word autism:

Challenge, Commitment, Amazing

You have an evening all to yourself. How do you spend it?

Eating Sushi & Reading.

Amy & Bradley, Walk Now for Autism Speaks 2012

Just For Fun....

Favorite Book: The Good Earth
Favorite Movie: Princess Bride
Favorite Song: You Can’t Always Get What You Want by Rolling Stones
Favorite Place You've Ever Traveled: New York City
Disneyland or Disneyworld: Disneyworld
Summer or Winter: Summer. I hate snow.
Morning or Night? Night.
Math or English? English
Baked or Fried? Baked.
Coke or Pepsi? Diet Coke only.
Biggest Weakness: Dark chocolate
Is the glass half empty or half full? Always half full.
Who stole the cookies from the cookie jar? Maybe me ;)
Favorite place to shop: Target

Visit Team Bradley on Facebook: www.facebook.com/TeamBradleyNJS

Visit Team Bradley 's Book Club on Facebook: www.facebook.com/TeamBradleyBookClub

**Are you or someone you know an All Star Autism Mom?**

If so....

Message us on Facebook and tell us your story! We will feature one All Star Autism Mom every Wednesday and you could be next! 

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!