The Importance of Spoons

Spoons!

They are handy for taking medicine, measuring, and for eating but they are so much more valuable than they appear to be.

I'm not talking crazy talk, I promise! This is what it comes down to.

Pain is a bitch.

A hardcore, evil, and relentless bitch.

I know I normally don't use profanity of any kind on my page or on my blog, but there has to be the occasional exception. This is one of them.

I can't remember what it's like to not be in horrible pain. It seems like it's been ages since my body felt the way that it is supposed to... But in reality, it wasn't all that long ago that pain was not a part of my existence.

Five years ago, I had finally managed to shed all of my pregnancy weight and I was feeling amazing. I was healthy, fit, and full of energy. My career was taking off and life was great.

I wish I would have known that it was all about to come crashing down around me. I would have lived it up a little more.

I would have gone horseback riding. I would have gone on hiking expeditions. I would have ridden every wild roller coaster within 1000 miles of here. I would have gone skydiving. I would have gone bungee jumping again. I would have ran through a field of flowers, enjoying the simple pleasure of feeling light on my feet. I would have gone snowboarding or ice skating. I would have enjoyed having the ability to be active.

These things are all out of reach now, and there are times when it really bothers me.

The last week has been tough hell. I feel worse than I normally do and it is definitly one of the times where I am unhappy with the limitations that I have. I've tried, in the past, to push those limits, but I always end up hurting myself. I have learned to respect them, but there are times that I also resent them.

Right now, I am resentful.

My back keeps twinging and my legs have felt as if I am soaking them in molten lava. I know I am on the verge of throwing my back out in a bad way. It won't take much. A sneeze. A turn taken too quickly in the car. Laughing. When my back is on the edge, as it is now, it takes practically nothing to push it over.

In addition to the normal pains and aches, I've been feeling really weird. My left elbow and shoulder have been hurting really badly. I've never had any kind of arm pain, so this is new. My knees have been inflamed and painful. My right leg is twice the size of my left. And perhaps the strangest thing of all, is the night sweats that suddenly started a week ago.

I have been waking up several times a night for the past eight days, with my clothing completely soaked. I have to change because the house is very cold and drafty during these winter nights. I'm not sure what is going on with my body. The only time I've ever experienced this was right after a steroid injection. But my last injection was 5 weeks ago and the steroids work their way out of your system by the 2 week mark, so I know that can't be the cause.

I've also been tired EXHAUSTED! I'm always tired. My back does that to me and Aiden does that to me, so this isn't new. But the last week, I've been beyond my normal level of tired. I've needed at least 11 hours of sleep each night and have been taking 1or 2 naps each day that last about 2 hours. I always need at least 9 hours of sleep to feel well and function, but 13-15 hours of sleep a day is ridiculous.

I've been trying to get our house together and begin packing, since we're going to have to move in two months or so, but I'm not making much progress. I'm so tired. My hands won't move the way I need them to. My body is on the verge of collapse after twenty minutes of packing or cleaning.

If you don't have a chronic illness, it's hard to understand. Very hard. That is where the "Spoon Theory" comes into play. I've never been able to articulate how it feels to be me. When I found this article I cried. It is beyond accurate. Take a peek:

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

www.butyoudontlooksick.com

So this is why I say that pain is a bitch. Exhaustion is a bitch too. I wish they would both drop dead and leave me the hell alone. It seems like my supply of spoons is being depleted. Let's say I started off with 30. I'm now down to about 10. I want my spoons back.

It was important for me to share this with you all because from time to time, I will be MIA for a few days. I want you to know, that I hate being away and that the only reason that I am, is because I have to use my spoons for that day for other things. And sometimes, I wake up with a shortage of spoons. Those days are really rough. I will be back in full swing tomorrow, but Corrin is rocking and rolling as the Head Honcho until then.

I miss you all and thank you for being patient with me. I will be posting another blog later today about a situation with Aiden that has also made life difficult over the past week.

With Love,

Amanda

To Autism, With Love

Dear Friends,

To Autism, With Love is up and running (for the most part) but we still have work to do! Lots of work to do...

I need your help! I'm looking for somebody who could help me design our logo (and I'm broke so it would have to be a charitable contribution!) and help us to define our brand. If you are interested, please message me on Facebook or shoot me an email.

I also need some help coming up with a slogan for To Autism, With Love and that's where all of you come in! In the comments below, please leave any suggestions you might have for our slogan and I will select a winner at the end of the month. You will receive 10 raffle entries on Rafflecopter (prize is Who's Shoe's ID tags) just for entering. The winner will receive recognition and some autism awareness gear. 

For more information on what To Autism, With Love is all about, please visit our page on FB and read about us in the information section. 

Thank you so much & good luck!

Amanda

New Year's on the Spectrum

Check out the awareness video that I put together to ring in 2013. Enjoy!

Make a video - it's fun, easy and free!
www.onetruemedia.com

The Resolution Solution for 2013

We have once again reached that time of year when we reflect on the year that has passed, think ahead of the year to come, and resolve to make an improvement in ourselves, in our lives, or even in our world.

The problem with New Years resolutions is that we only make them once a year. More often than not, we don't follow through on them and by the time December reappears, they are nothing more than a distant memory. According to a study published by The University of Scranton, Journal of Clinical Psychology, only 8% of people are successful in achieving their resolution.

The reality of the situation is that we should be examining ourselves each day and making efforts to improve not only ourselves, but our lives and the world that we live in. Each of us should work on setting sustainable goals and putting a plan in place to meet them. Even more importantly we should revisit these goals daily to see what progress has been made, and where improvement is still needed.

But I digress.

In the world of an Autism parent, resolutions are a year round thing. Whenever a new behavior surfaces, each time a therapist works with my child, and every time I attend an IEP meeting - it all comes down to making resolutions. 

Then New Years Eve rolls around and while my friends are gathering to celebrate, I will be at home with my Aiden. We'll order a pizza, bake cookies, and watch a movie or two. We'll ring in 2013 with the East Coast, at ten o'clock our time, and then off to be he will go. I am not about to destroy his routine for one night of fun.

When he's in bed, I'll scroll through my news feed on Facebook which will inevitably be littered with festive photos of my smiling pals. My friends, dressed to the nines, looking beautiful and glamorous, will be partying and having the time of their lives. I'll feel envious of the fun they are having, but only momentarily because I have learned to embrace the life I have been given. I am content being at home with my little man while everyone else is out drinking and dancing the night away.

I have learned over the last few years not only to truly appreciate the little things, but also what it is in my life that holds value and what doesn't. My friends mean the world to me and I enjoy a night out with them just as much as the next girl. BUT, I also know that this New Year is no different or any more important than the one that came before it or the one that will follow. A different calendar will hang on the wall. I might continue using 2012 when I write the date for a week or two. But overall, everything will remain as it is. The holiday doesn't seem like that big of a deal to me and I would rather spend the night with my monkey than be out celebrating.

Don't get me wrong. 

Celebrations make life exciting and for most, this is an excellent opportunity to have a good time.

I'm not opposed to New Year Resolutions. In my opinion, anytime you make the choice to try and  better yourself somehow, it's a good thing.

My point is that maybe we would be better off making that choice before or after the start of a new year. We would be better off if we measured our success by keeping tabs on our progress, every single day. It's about constantly striving to be better than you were the day before,

Set a daily reminder on your phone, to keep your goals front and center. Write them down on post-it notes and put them up in your bedroom, on a mirror, anywhere you will be sure to see them each morning. Your chances of success are much higher if you have a constant reminder. It will intensify your motivation.

If you haven't guessed yet, I have no resolution for the New Year, but I do have three that I made many months ago and one that I added last month. The following are the things that I focus on every single day and I don't see that changing anytime soon.

My Resolutions To Live By

• Be the best Mom that I can be to Aiden. Love him, praise him, nurture him, and encourage him. Watch the things I say not only to him, but in front of him. Lead by example. Raise him to be an honest, hardworking, respectful man with integrity and a giving spirit. Tell him every day...every hour if possible... just how much I love him. Shower him with hugs and kisses. Make sure he knows that he can do ANYTHING that he puts his heart and his mind into. Make sure he knows how much of a blessing he is.
• Be the best person that I can be - for myself. Be the kind of girl who handles herself with class and grace. Don't be drawn in to petty drama. Don't cuss like a sailor. Do things that make me happy and make use of my talents. Have a generous heart and a giving spirit. Be compassionate to all people and always do what I can to help them out. Smile as much as possible. Keep a positive state of mind and always keep moving forward.
• Raise Autism Awareness & Support the ASD Community! I continue to run the page and this blog for very specific reasons. As much as I love to see our number of friends increase, it isn't a popularity contest for me. To me, it's about interacting with every person who has become a friend of our page. It's about setting misconceptions straight. It's about reaching out to those who feel alone and letting them know that they aren't. It's about new friendships, support, and lending a helping hand.
• Help lots tons of autism families! Being able to play a small part in helping other families this year only made my desire to help grow stronger! It was a great start but next year is going to be HUGE! To Autism, With Love will focus on providing assistance, support, and resources to families in need. I am ready to launch and praying for this to be wildly successful! 

THE CHALLENGE:
Try something new in 2013 and nix the New Years resolution. Instead make a list of Resolutions to Live By. Find a way to keep them in your mind at all times. Set reminders, make notes, do whatever it takes to set yourself up for success.

CREATE YOUR LIST BY JANUARY 15, 2013
Once you have created your list, please share with us through a Facebook message or through email. We will share the lists starting in February and the one we find to be the most inspiring, will win a prize!

Happy New Year to our Army! May your children have a happy year, filled with progress! May you have a low-stress year full of love and happiness! May those who are not affected by Autism, come to understand and accept it, without pity and without fear. May 2013 be filled with blessings for you and your family!

Together, we will raise a TON of Autism Awareness in 2013. It's going to be an awesome year.Thank you all for supporting our Army in 2012.

With Love,

Amanda

My Heart Grew Three Sizes This Christmas

"It isn't the size of the gift that matters, but the size of the heart that gives it. " - Unknown

The past few weeks have been a whirlwind. I am exhausted and my back is killing me. If this post is full of typos, is incomprehensible, or otherwise not up to par, please just remind yourself to keep the Christmas Spirit alive, and continue reading on. And hey... you might as well do it with a smile on your face! 

About a month ago, after spending an entire morning crazed with anxiety, I sat down to blog about the source of my frustration. I was feeling very alone and out of options. I was going to lose my mind if I kept everything bottled up inside of me. 

I asked my readers to pray for a Christmas miracle for my family, with the hope of receiving encouragement, prayer, and support from the amazing people who have lifted me up so many times before. What happened in the following weeks was nothing short of amazing and completely unexpected. It was an answer to prayer, and the miracle we desperately needed. 

The first and biggest problem that we faced was not having the money to pay our rent. I had searched long and hard to find resources that would assist us, but funding for the year was exhausted, and there was nothing available.

I was terrified at the prospect of losing our home. And to have to have that happen right before Christmas would be even worse. The stress that the situation was inflicting on me, was making me physically ill and I was almost ready to give up the fight.

Just when I was starting to lose all hope, I met the Perez family, who are members of the church that Aiden and I attend.  Anitra is a breath of fresh air with her beautiful smile and her sparkling eyes. She is outgoing, friendly, and so kind. Her husband Bert is a gentle spirit who has a lot of passion for life. They are a beautiful couple with two amazing kids - Justin & Lexi. 

Anitra and Bert are two of the most compassionate and understanding people I've ever the met. They didn't judge me or the situation I was in. They doted on Aiden who has been asking to see them again ever since. And then they generously offered to help with our rent for December. They couldn't pay everything, but promised to cover as much as they  possibly could. I can't begin to explain how their loving act of kindness touched my heart. It was the start of something beautiful that would change me forever.

A few days later our local weatherman, Steve Stucker, and his wife Rose, asked if they could stop by my house for a visit. They not only stayed to chat with me for about 20 minutes, but they also gave us a check that covered a third of our rent.  I was so stunned by their generosity and realized that their gift would probably be my saving grace (it was). I couldn't cry. I couldn't speak. My throat was choked up due to brimming emotions and all I could do was smile. I was barely able to say thank you. My only regret is that Aiden was not able to meet these two inspirational people. I hope he has the opportunity some day soon. 

With the help of these amazing families, we were only $200 short of paying rent and thankfully, Aiden's father agreed to pay the rest. I felt one thousand pounds lighter. Our rent was paid and we wouldn't lose our home... at least for this month. I know that I have been blessed beyond measure . I am so very grateful to have had the honor of meeting these amazing people. 

With the weight of the rent problem gone from my shoulders, sleep started to come a little easier at night. I knew that in a couple weeks time I would once again be looking for a way to pay my rent, but for the moment, everything was settled. And I was okay with that.

In addition to his kind gift, Steve publicly supported our cause and our Army on Facebook, where he has over 4500 followers. He's a local celebrity here in New Mexico. Knowing that the autism community has his voice, speaking on our behalf, is nothing short of amazing! I will forever be thankful to know this man with the beautiful spirit and the heart of gold.

Even with our rent paid, our problems were still many and most had no obvious solution. My utilities were three months past due and needed to be paid. Even worse was the fact that Christmas was rapidly approaching and I wasn't sure how I was going to get gifts under our tree. I had several people offer to help with gifts, but when help had not arrived with less than a week until Christmas, I began to panic. 

I spoke to my friend Dee, who recently started a group on Facebook called Helping Hands, and she ran with my request. She began searching for people who were willing to help us out. 

My sweet friend Tabby not only helped me out with part of my past due utilities, she also began spreading the word about my situation and asking her friends to help as well. 

Christmas crept closer and all of a sudden, packages began to arrive from all over the country. Packages from people who follow our page. Packages from those that Dee & Tabby had recruited to help. Every time a package arrived, I would end up in tears, joyously thanking God for his provisions and for putting these angels into my life.

 A total of seven people helped out with Christmas gifts and I've never been more overwhelmed or more humbled. More amazing still was that two people sent help in the form of gift cards. And at the last minute my mom also contributed to the cause. This allowed me to choose a couple of gifts for Aiden on my own (which I've always taken for granted... never again!) and also purchase his stocking stuffers.

Christmas Eve arrived and once Aiden was asleep, I turned on one of those cheesy Hallmark Christmas movies and sat down on the floor. I did all of my gift wrapping that night, as I do every year on Christmas Eve. With every present I wrapped, my heart swelled with love and appreciation. 

When I finished, I carefully arranged the gifts underneath our tree, propping Aiden's stocking in the front. I stood back to admire my work and was overcome with sheer joy as I looked at the final product. I had admired this Christmas tree after my Christmas Eve wrapping marathons for the last five years. I've done so and felt an almost smug satisfaction when it came time to check out the end result.

Christmas Eve 2012 - All of the gifts are wrapped !

Not this time. This time was much different.

This time I saw the array of gifts under the tree, with a new pair of eyes. I knew we had been blessed beyond measure and that cast a whole new light on this Christmas tree of mine. I felt grateful. I felt love for every single person who had contributed to help make this perfect Christmas possible for my son. The tree was stunning.

This was the most beautiful our tree had ever looked. Each one of the gifts had been given out of the goodness of someones heart. Simply because they were thinking of somebody other than themselves and knowing that made every gift even more special.

Ready for Aiden!

Sara Kirsch DeSoto, a new friend who follows my page, was sweet enough to knit a beautiful frog for Aiden. It was one of my favorite gifts, and one of his as well. We both understood the time and love that Sara put into creating this frog. It's awesome to know that it's an original... one of a kind. 

Tabby's friend Peggy Zmrhal sent a $25 Toys 'R Us gift card so I could buy a present for my little man, but sent me a very cool gift from "Santa" as well. She included a homemade Santa gift tag and a beautifully made card with the sweetest message. It brought tears to my eyes. I'm so happy to have met my new friend, Peggy.

Not one of these wonderful people were in any way obligated to help us. They did it because they truly wanted my child to have a wonderful Christmas. They wanted it just as much as I did.

This is what Christmas is all about. The joy of giving. The pleasure of seeing humanity at it's absolute best. The opportunity to show my child that we all need a little help sometimes. 

Next Christmas, I want him to be on the other side of the fence. I want him to feel the happiness and satisfaction that giving brings. He knows the joy of receiving but now he needs to see firsthand the joy a small act of generosity can bring to a person. Lessons learned this Christmas will be a great starting point for our lesson in 2013.

Now that Christmas is over I can say that this Christmas was both the worst and the best that I've ever had.

It was worse than any other Christmas because I have lost a lot of control in my own life. I am independent, strong willed, and take pride in keeping my life in order. It was horribly embarrassing to publicly declare the state that my finances are in. The stress I endured in the weeks leading up to Christmas was intense and unrelenting. I must have cried myself to sleep at least five or six  different nights. As relieved and grateful as I was when we received help, I feel guilty that people had to help us not only with rent, but with Christmas.  It was a hard thing for me to do, but the smile on his face on Christmas morning made it so worth it.

It was the best Christmas because I was able to realize that even in the midst of this ugly world full of ugly things and ugly situations, that beauty still exists within humanity. Compassion is still somewhere inside of us all. Some of us have to dig deeper than others to find it, but I believe it's a gift we all possess. 

The love and compassion that was shown to Aiden and I this Christmas, was truly a miracle and a blessing. The majority of the help we received was from complete strangers who will now hold a special place in my heart until the day I die. 

I even made several new friends this holiday season. They are the kind of friendships that will last for a lifetime. There is no better gift than friendships of that quality. 

It really isn't about what's under the tree on Christmas morning. The iPad's, the Wii's, the DVD's, the toys... they are all fun to have, but sometimes they dampen the true meaning of Christmas. I've always known this, but now I really feel it in my heart. 

Christmas is about bringing joy to those around us. It's about loving people, even those who you don't know personally, with everything that you have and all that you are. It's about personal sacrifice in the name of helping others. If we all took the time to truly love our neighbors, do you think this world would be in it's current state? I don't. 

Putting my own struggle aside, I encountered many other families across the country this year, who were also suffering. I was able to connect many of those families with people who were willing to help. It was such a fantastic feeling to be a small part of making Christmas magical for others. 

That feeling only added fuel to a fire that had been burning within me for a very long time. An idea that had been in my mind for months finally was starting to take shape and I knew exactly how I wanted to proceed with my life. I have been consumed by the desire to pay it forward and provide the same joy for other children that has been given to my son. 

With that said, I have a HUGE announcement to make.

On January 1st, I will launch a new Facebook page and a new blog entitled, To Autism, With Love. I am in the process of turning To Autism, With Love into a non-profit organization. Our mission will be to provide certain types of  assistance to autism families throughout the year. We will also help as many families as possible with Easter baskets and Christmas gifts next year.  Stay tuned for more information over the next week! 

We have already received our first two donations, which total $125.00. This money will be used to put together the very first Autism Family Care Package and several other items that will be up for grabs in January. To find out more information, be sure to like our Facebook page and follow our blog. I will post the links to both on Monday or Tuesday. 

To each and every person who helped make our season bright, thank you! Your kindness will never, ever be forgotten and I promise to pay every bit of it forward - tenfold! 

I didn't name each individual that helped us, but please know that if I have your address, you can expect to be receiving mail from Aiden and I in the next week or so. We are grateful to you all!

Aiden with his awesome Remote Control vehicle that was sent from our friend Sandra Muldoon

Aiden loved his Glow Crazy Doodle Dome! One present Mama picked out that I knew he wanted. :)

Sara Kirsch DeSoto made this cute little frog for Aiden! She called it a hybrid of Kermit and an alien. I just call it cute!

A gift from one of our angels

Aiden loves to color! Thank you, angel!

One of Aiden's favorite gifts, courtesy of the Rosales family. Thank you!!

The crafting jackpot!! What an amazing gift! Thank you! Aiden was beyond thrilled with this gift and even gave a few coloring books to another little boy whose mom is struggling this Christmas! :)

A sweet gift from my new friend Peggy! <3 Thank you!!

A beautiful card that Peggy made. :)

The Santa gift tag that Peggy made for Aiden. She is beyond talented!

Peggy also sent a gift card that allowed me to buy Aiden a game for his Leapster from Santa to go under the tree! Thank you!

Thank you to every one of our Christmas angels. You have done more than just help our family out this holiday season, you have opened my heart to bigger and better possibilities for my life. 

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!