Update

I just ate a banana because I read somewhere that it may help my eye to stop twitching. It's been twitching for over a week now, and this morning I finally googled the "cause" and "cure" and the suggestions were to get at least 8 hours of sleep a night (ya right) and ease the stress in your life... however the hell you do that! Between Autism (which in our house = nocturnal, flappy, happy child), and my teething baby, I MIGHT get 1 hour of sleep at a time, never more than 2, and only in my dreams will I ever again see 8. But whatever....I can power through, and am certainly grateful my kids are here in this house and not in a hospital or locked away in some institution. I'll get up for the rest of my life if that's what it takes. Though these eyes are tired and twitching, I can still see what's really important.

It's been a trying few weeks to say the least, and thankfully we have had some exciting distractions to pull our heads out of our asses and give us a break from the worry and anxiety. Avery did GREAT at her 24 hour EEG, and they ruled out landau-kleffner syndrome. The Rett Syndrome test won't be back for a couple of weeks, and though she didn't seize during the testing, the results were still "inconclusive" as to whether she has or will seize. Everybody, including the baby and my mom who was visiting) had and overcame strep throat, and the baby has also had a lung infection and is still on breathing treatments. We are hoping that when that is cleared up she will start sleeping again... fingers crossed!

At her 4 month check up the pediatrician noticed that her red eye reflex was asymmetrical, so she referred us to a pediatric eye doctor who scared the shit out of me at the start of the appointment by suggesting that baby P could have a retinoblastoma. She doesn't, but why she scared the hell out of me for 45 minutes I'll never know. There are some issues with her eyes and her vision, and that coupled with her hypermobility (freakish double jointedness) made her suggest that we get a genetic workup done to check for Marfan Syndrome and or Ehlers-Danlos Syndrome. Both have some scary components, but frankly, neither are intellectual disabilities so I am more okay with these possibilities than I would be if we were talking Autism again....or even Mastocytosis which increases cancer risks significantly. Neither of which does the baby have any sign of so far. That sounds bad...and I know I shouldn't compare, but when thinking about quality of life, fundamental abilities to relate and communicate to others, and overall daily functioning, a few physical abnormalities seem like a cake walk. As long as it's not life threatening... we are good.

So, sweet baby Presley has an appointment with a pediatric geneticist on St. Patricks Day. So again, we wait and see. And in the meantime, we enjoy her precious giggles, big gummy smiles, and adoring babble. She is such a pleasure to parent. We love having a baby around!

We also just had Avery's annual ARD meeting with the school district to determine goals for the upcoming year, decide placement, and review progress. Avery has made some good progress in her classroom in the past year, especially with her motor and cognitive skills! She is being moved, however, out of her Total Language Classroom (for kids with moderate to severe Autism) and in to a Life Skills Classroom (to learn more fundamental self-help and daily functioning skills). Her class will have kids with various disabilities and we are nervous and excited for her to start elementary in the fall. Scary how time flies. Makes my heart a little heavy.

Kaylin, who I don't mention nearly enough on this blog, is super independent, fiesty, and into everything! She is starting to read a little bit, talks like a teenager, and is very into Justin Bieber. Did I mention that she is not even 3? She MUST do everything herself, from dressing to food preparation, and loves to be loud and hyper! She is a blast, and brings quite a bit of drama, trouble, laughter, and joy to the mix. Love that little red head.

The other big, albeit not nearly as important news, is that we will soon be moving to a new house here in Frisco! It has more space, and a pool which we are both excited and terrified to have! Before we move in a safety fence and several door locks will be in place... so I can get my one to two hours of sleep at night. We decided to get a house with a pool as Avery LOVES the water (and has no fear) and can do some therapy in the water, as well as hopefully improve her body awareness and sensory needs. I think it will be great to have here in the hot summers... though I'm sure one very expensive hole in the ground to maintain. But it's worth it not to have to haul my three kids out in the heat with all of our stuff to go somewhere else to swim.

So we are busy with kids, doctors visits, schools, 22 hours of therapy a week for Avery, work, and house stuff, but we are somehow keeping our sanity in tact and enjoying our precious little ones. Hope you and yours are finding peaceful moments, and time to be grateful.

Unique

As many times as you may hear me say that "I don't care what people think," that really isn't true. For as long as I can remember, I have probably put an equal amount of energy into trying to be both unique, and respected all at the same time. I don't want to "be like everyone else," but at the same time, I abhor feeling so dissimilar that no body understands me at all.

I have a child who is VERY different from most. Sure, all of our children are wonderful, unique, spirited little blessings....but throw disability and disease into the pot, and all of the sudden I have a whole new set of circumstances to navigate, a whole different set of priorities, challenges, celebrations, worries and feelings. A whole new life than what we expected or planned for all together. I'm not necessarily complaining, it's just what is.

I have used this blog many times to try to convey what that is like. How our experience has transformed us, and continues to shape our every day, our every experience, our every mood and attitude. I have used this blog to help me sort through my own feelings of love, pride, grief, sadness, guilt, anger and so on. For the most part I have been completely honest, but recently, following two very judgemental and negative comments regarding my words, I have felt a little more cautious to say how I really feel. A little more guarded and defensive about sharing the darker sides of dealing with disability. Maybe I should have been a little more private about who reads this? After all, if you don't KNOW me or Avery specifically, trying to understand where I am coming from may be damn near impossible. But I digress..

So what, you might be asking yourself, is the purpose of this post? Just as I want to be both unique and accepted, I also want to try to share how it is you can love someone so much who has Autism, yet hate the "autism" all at the same time. I LOVE and appreciate all that Avery teaches me on a daily basis, and really do believe that in time we will be better because of disability, but I also hate what Autism takes away from my daughter and my family. Just as the snow and ice outside are beautiful, it sure does make traveling on the roads treacherous.

Maybe it all goes back to how we define our children. I must admit that every time someone describes Avery, or anyone for that matter, as "autistic" I cringe and die a little bit inside. She is so much MORE than that, and after all, she is a child first. So I always say, "this is my daughter Avery, and she has Autism." If I keep the two separate, then when I say I am having an "I hate Autism day" it doesn't EVER mean that I hate my daughter. Just as if you say you hate cancer or diabetes, or the freakin flu, I am allowed to dislike Autism sometimes, and not always find it fascinating, easy, amusing, or beautiful. But I assure you that every moment of every day I love my daughter. No matter what. Autism or no autism. Without end. Without conditions. But of course I still have fears, anxiety, anger, and sadness. I'm sorry it's not all positive rainbows and butterflies.... some days it's REALLY hard. Others are pretty great. It's life. And it's one I am incredibly happy to be a part of.

So there. I will not apologize for my feelings. I won't tell you that it's all ok, because I don't know that it is, or that it will be. But for today, for this moment we are hanging in there. Today we are still searching for answers. We are still trying to manage Avery's symptoms of mastocytosis which are seemingly terrible, and determine why her developmental progress is so painstakingly slow.

A few facts about where we are today: Tomorrow Avery will have her 5th set of ear tubes surgically placed, then in the next week or so will undergo a 24 hour hospital stay to run several tests to determine seizure activity, run more blood work etc. Her doctors think she may have a second autoimmune disease called landau kleffner syndrome, and/or Rett Syndrome. Her motor skills, while somewhat improved, are still very impaired, and she is unable to run, kick a ball, jump, skip etc. She walks WAY up on her toes, and can't bend her ankles the other way at all. She is still no where near potty trained, is completely non verbal and remains very much in her own world. If you let go of her hand she would wander off in a second, and doesn't respond to verbal commands very well at all. She is still working on self feeding, and can drink from her straw sippy cup. She will be five years old on March 28th.

Now, for the positive spin on the aforementioned facts: IF Avery has landau kleffner syndrome, then anticonvulsants and steroids SHOULD help her developmental skills. If she has Rett syndrome, there are some promising animal studies in process for certain drug therapies that could one day help her. Since she can't run, when she wanders off she is pretty easy to catch. Since her motor skills are impaired, she has yet to figure out door locks so wandering away from the house is not a problem! Diapers are easy to change and now she gets them FREE through the medically dependent children's program! Since she doesn't talk, she also doesn't complain or talk back, though we usually know when something is wrong because she cries or whimpers. Her five years on this earth are FULL of purpose. She has shined her light on so many hearts and has improved my life, my perspective, my heart and my soul tremendously. We are blessed to have her... autism or not. And though I hope and pray for her to get better, and for her to have a complete life, I also wouldn't change much of our journey so far.

We are lucky to have her. Her sisters are and will be lucky to share in her life. And even though Autism has "taken away" a lifetime of possibilities, it has also given us life lessons for which we are so eternally grateful. The dichotomy of it all can be overwhelming, but we are in this for the long haul, and everyday I feel a little bit stronger, and more capable to push forward. Nobody knows what lies ahead. But for us, we choose to be grateful for our loved ones and our time together. And we ALL can relate to that.

laughter

There is no better sound in this world than the sweet, endearing giggle of a beloved child. It is music to the soul, and the melody brings smiles to the witnesses, and warmth to their hearts. Presley is just starting to really "belly laugh." It's wonderful. Kaylin is a barrel of laughs, always being over the top and dramatic about everything, usually laughing at her own stunts and describing herself as "oh so funny."

Avery on the other hand, has a different kind of laughter, and given that her perceptions are so drastically different than ours, we tend not to be "in on the joke"... but we are eternally grateful for the experience. Avery LOVES "Go Diego Go," and particularly loves the episodes that have some sort of flapping/flying bird... birds always get her laughing, she also LOVES to swing and climb, and does so with a giggle and a smile, which makes OT worth every penny as she learns to motor plan, and have better balance and coordination. She also get's a kick out of physical "rough and tumble" play. Her dad is the master of inspiring an Avery cackle.

Having a child with Autism tends to strip the fun out of some types of ordinary family activities. Going out is more challenging, and until you've been there you really have no idea how much so.... so most of our miraculous and precious moments are within the walls of our home.... where our "normal" exists, and where no one judges, stares, expects or requests us to be anything other than who we are.

Avery doesn't use words. She doesn't seem to understand most of what is going on around or even within her, and isn't yet very responsive to verbal language.... yet I assure you, she is communicating all of the time. If you take time to know her, you would see that she exudes happiness, and certainly has lots of preferences and favorites. I read a blog today that talked about how easy it can be to almost forget our kids who don't talk and don't seem to understand are even... there. We talk about them in front of them, and assume they are as clueless as they appear. But they aren't. Time and time again I hear about older kids with Autism being able to describe their experience... and we forget that just like all kids, our little ones with Autism, like all humans, want to connect. They just lack the skills to know how. It's our job to help them. To be their voice when they haven't found theirs yet, and to guide them through the confusing and complex world that overstimulates their disabled central nervous system. It's OUR job to interpret the laughter. To USE the happy, albeit very few moments when they connect to us, even for an instant, to build on and bring them closer. To meet them at their level, and let go of expectations and simply giggle with them.

So today I am grateful for one of the things my precious 4 year old with Autism CAN do. She can laugh. She can lift my sorrow and she can STILL light up a room. They may be a few of you who would look at her with questioning eyes as she chuckles and shrieks with merriment at seemingly nothing... but I invite you to be in on the joke. Life is grand. Isn't it amazing that my precious, disabled daughter can find so much joy and hilarity in the simple things.

Our 2010 Holiday Letter

2010 brought with it an abundance of Grace, Joy, and finally, Hope. The highlight of the last 12 months has certainly been the birth of our precious third daughter. Presley Hope Beeson arrived just in time for the dreadfully hot summer to come to a close, and we welcomed her with tenderness, love, excitement and tremendous joy. She was a few weeks early, so she spent a couple of days in the NICU, but once released she has been an absolutely precious and easy baby. She spends most of her time nursing, sleeping, and being shuffled via carseat from appointment to appointment. We are loving having a newborn around to remind us of the beauty of new life and the amazing power of unconditional love. We are so blessed.

Kaylin Joy, our precocious 2 and a half year old, is as spunky as ever. She brings so much laughter to our home, and gives us even more opportunities to practice patience! She is attending an Episcopal preschool here in Frisco, and is thriving there. There is never a quiet moment in our home when sweet “Kaylee” is around, and she is already demonstrating her sisterly love as she adores her baby sister, and helps us everyday with little things for Avery. Kaylin amazes us on a daily basis, and we can’t wait to continue to watch her grow and develop into a fiesty little lady. We are so grateful.

Our precious Avery Grace is 4, and continues to work so hard every moment of every day to learn how to live in our world. She now takes the bus to school five days a week, and spends every afternoon in therapy. Avery is quite the trooper though, and she is almost always in a good mood and goes with the flow. She recently qualified for some state programs here in Texas which we hope will slightly ease some of the financial burden that goes along with having a medically fragile and disabled child. Avery is still non-verbal and needs assistance with even the most simple of tasks, but she teaches us so much about compassion, true love, gratitude, and grace. Avery’s impact goes beyond our family too, as she was lucky enough to have an ARMY of supporters as we walked to raise awareness and money for Autism Speaks again this year. We raised almost 2000 dollars, thanks to dear friends and family, and we were lifted up by our loved ones as 40+ friends and family came out to support us in their “Avery’s ARMY” t-shirts. We felt so empowered, and so incredibly grateful. In a world that can at times be very sad and isolating, it was a day that brought with it a renewed sense of strength and endearment. We are so hopeful and encouraged.

As for me and Bryan, aside from juggling our three bundles of joy we are doing great. Bryan still works at Power Brokers and seems to enjoy his position there, and I still do some contract work here and there for special needs families/kiddos, and love to have the opportunity to share some of what I know as both a therapist and a mom. Bryan and I are as united as ever, and remain a team in every sense of the word when it comes to our family. We are committed and fulfilled.

Learning to let go of expectations, live for today and not project into the future has not been the easiest of tasks, but as we strive to do so, we find that the simple moments many take for granted can sometimes be the most miraculous. We wish you all a blessed and peaceful holiday season and 2011, and we hope you and yours find many moments of laughter and joy as you share precious time together.

Light

One of my favorite things to do during this season of giving and thanks is to simply drive around and admire the lights. Even as a little girl, even when it wasn't Christmas at all, I would beg my mom to take me out to see the lights of the night time... even just the lit up grocery store signs would make me giggle and smile.

For the very first time this year we will be celebrating Christmas at our home in Texas rather than traveling to Atlanta, so I couldn't wait to put up our very own lights to join in on the season. Something about light still brings warmth and joy to my heart, and as I ponder this phenomenon, I realize that my own journey has many "lights" that lift me up when I am having a bad day, and bring a sense of ease to my soul when I let fear or darkness ease in a little too much.

The brilliant and beloved Martin Luther King once said "But I know somehow, that only when it is dark enough, can you see the stars." Lately, I have been using this blog as an outlet for my feelings when I am having a hard or dark day. Most of our days are actually good, and I am delighted to say that even amidst that chaos, I have found a peace in the day to day experience of being the matriarch of my beloved family of 5. But I must say that I am truly grateful for those "darker days" as they allow me the opportunity to practice patience, to practice that art of maintaining an attitude of gratitude, and to have a much greater appreciation of the many lights in my life that bring color and brilliance to my family, my perspective, and my overall life experience.

I have to say that most of the "lights" in my life come in the form of people. People to help me choose laughter over tears, who demonstrate love and encouragement in their words and actions, and who, like me, can see the love and light in Avery's eyes. All three of my precious daughters are a huge source of light to my soul. Each of them, in very different ways, afford me the opportunity to learn and grow as an individual every single day, and I am so grateful to be so lucky to be their mom, and watch them change and develop into their own very unique little people. Disability or not.

Earlier this week I had the chance to meet another beaming light. It was a quick encounter, but it came just in time to illuminate a dark day, and I want to share it with you. I was in the waiting room at Avery's OT appointment and I met a handsome little boy, about 10 years old or so. He was playing and communicating with his babysitter, but not in a way that you might think. I realized that he was non-verbal, and had Autism... and was then so excited to see him use his electronic device to be able to express social gestures, wants, humor, and needs. It was a touch screen device that he could type in or touch a series of pictures. Then it would "talk" for him, allowing him to verbally communicate without saying a word! Very cool, right!? I thought so, and I can't tell you how much hope and light this brought to my day!
Avery is doing great on her touch screen ipod and ipad. And we have purchased several app's that should do this same thing for her one day. She is pretty preoccupied with her games, songs, and videos on it right now, but I am very hopeful that in time she too will be able to use her very own device to communicate with us in some capacity or another!

Sharing my fears, thoughts, anxieties, heart and soul on this forum has it's pros and cons. I can't please everyone, and that certainly isn't my purpose. I write on here because it is cathartic to me, and because I have family and friends who love Avery and our family and want to hear about our journey. If you know me at all, then I hope you know that at the end of the day, I love my life... the good parts, bad parts and ugly parts. They weave together to form a colorful, beautiful, warm and empowering experience that I wouldn't trade with anyone's. Even disability and disease can't weaken the bonds or limit the love, and through the darker days, I am able to see more light than I ever imagined. We have each other, and that is the brightest part of all.

Maybe

I don't know exactly what it is.

Maybe it's the time of year. Maybe the hustle and bustle of Christmas, the smiling, hopeful, children anxiously awaiting Santa, the many family activities and traditions all around me... maybe that's it.

Or maybe it's the 4 and a half year mark. I remember hearing in grad school that the critical language development is almost over by the time a child reaches the age of 5, and that if a child hasn't developed some form of communication or language by then, that the chances of language acquisition in the future are very small.

Maybe it's the astoundingly astonishing skills I see my 2 year old perform on a daily basis that I am so incredible grateful for, but that are also a constant reminder of what "normal" is and what my precious older daughter may never be able to do.

Maybe it's the wonder, fear, hope, and almost agonizing and overwhelming feelings I have when I worry about the future of my adorable 3 month old baby girl. As I fall more and more in love with her, I can't help but wonder if she too will one day drift away. Barely looking at me, not noticing that I am even in the room, being painfully silent and indifferent, and completely unaware of own actions and her impact on the world around her.

Maybe it's the stories I read as I do hours of "Research" on Autism treatments, testimonials, therapies, and so on. Stories where children "finally" learn to talk and connect with their parents, some even learning to say "I love you." Maybe just maybe it's too painful to read when my child doesn't say a word. Not a single fucking word. Maybe I'm too selfish to read these stories without feeling even more sad and alone when all I am really looking for is some hope. Some glimpse that one day this will maybe just maybe get easier. Maybe I know that it won't and that scares me to death.

Maybe it's the hormones. The euphoria I felt right after having sweet Presley is fading I guess... And there certainly has to be some chemical/brain component to explain this rut.

Whatever it is, you can obviously see I am struggling.

Maybe I shouldn't be writing this post... but maybe some of you reading it have been here before... and maybe it will help you in some way not to feel so alone.

Don't freak out... I'm not on the brink or anything, just having a hard day.

I have a hard time seeing the "end" of all this, maybe because there is no "end" to this particular crisis.

I know some people certainly have it worse. Things could always get or be worse.

I also know that I have PLENTY to be grateful for. And I am. But I am also entitled to be a little pissed every now and then. To be real and raw and up front about how unfair life can be. About mastocytosis. About Autism, and about missing my daughter who used to light up a room with her smile.

So maybe I should spend my time counting my blessings rather than my hardships.

Like my loving, supportive, helpful husband and extended family.

Like my fiesty, healthy, most of the time happy toddler and smiling, gurgling, adorable baby girl.

Like my health.... a huge one...even though I would happily trade my life if it meant hers could be healthy.

Like my beautiful home.

Like my supportive friends.

Like the times when Avery hugs me.

Like the times when she smiles in pride when we praise her like crazy for occasionally going potty on the toilet and not her diaper.

Like when she catches my eye, even for a split second before looking away.

Like her laughter.... her spirit, her smile. Her generally happy, albeit disconnected, disposition.

And my precious life so far that has shaped me into someone who maybe, just maybe can come through this stronger and better. God I hope so.

I really can see the good despite the bad.... but I must say that I had no idea how hard this would continue to be. And she is only 4. geesh.

Maybe our story can be a wake up call to someone else. Maybe it will help someone like me not feel so helpless, guilty, sad and isolated. Maybe the good is right around the corner, and we just have to keep plugging along to reach it. Or maybe it's staring me right in the face and I just have to keep looking to find it.

Lot's of "maybes."

A few certainties, or "things I know for sure:"

I certainly need to look beyond language. I certainly do and can continue to find ways to connect with and love my daughter, that extend beyond words and gestures.

I certainly can see how her life and disability create balance and beauty by the lives she touches and the hearts she manages to open.

I certainly will find a way to give her life purpose and meaning.

I will certainly have hard days, uphill struggles, but I will also have amazing days, and will be able to find hope and possibility in the tiniest of successes.

I certainly know more about love, joy, courage, hope and heartache than I ever understood before.

I am certainly better because of Avery. And because of her precious sisters, who I certainly believe will also one day benefit tremendously by the way of compassion, tenderness, and unconditional love.

I certainly feel better after writing this post... so maybe it wasn't such a bad idea after all.

Blissful ignorance

If someone had told me when Avery was first diagnosed with Autism that she would still be non-verbal at 4 and a half I wouldn't have believed them. After all, before this all happened, she HAD words. She HAD gestures and social skills.... I was CERTAIN that it was just a matter of time before they came back. Boy was I wrong.

I remember struggling when I would see neuro-typical kids doing cute and normal things, responding to their environment, to their parents, and participating in daily activities. My heart would just sink. I was sharing that with my dad at the time and he advised me to stop comparing... and if I had to compare, to compare her to other children with Autism... because he, like me, assumed she was high functioning, and only mildly impacted. In fact, when we first went to the neurologist and the developmental pediatrician, they were both reluctant to diagnose her... then by the follow up visits they both said "PDD_NOS" or mild Autism. Now we have a "moderate to severe" case. So we were gradually eased into this world of disability. And even though we have ALOT of therapy and routines in place, at times I still feel like I am drowning. Some mornings I still wake up and can't believe that our life has turned out the way it has. I can't believe that after the tens of thousands of dollars spent, prayers said, and therapies tried... that she is where she is. It is mind boggling.

I have written time and time again about finding the silver lining, about focusing on the positive, about altering the way we think and perceive our situation and about the beauty of disability and the light I STILL see in my beautiful daughter's eyes. And I still stand by those posts... but it's also important to share that even when things don't necessarily "get better" that we are still able to march onward. To find happiness and hope within the precious moments even when the whole thing seems agonizing and unfair.

I wish that I could tell you that I have figured out how to completely let go of the "what if's" and the "why me's." I haven't. It still sucks, and as my sweet non-verbal four year old gets older and bigger, I fear that our challenges will only get more difficult and complicated. I guess I am glad that I didn't know where we would be today when she was first diagnosed with Autism. And the truth is, I don't really want to know where we will be four years from now. Having hope and optimism is part of what keeps me going. I can appreciate the smiles, occasional gazes, happy sounds and simple attempts to communicate. Things could always be or get worse... but thankfully we have an army of supporters to lift us up when times are hard. To remind us that we are loved, and I know that we are.

The lessons I continue to learn about myself, about the love and generosity of others, about the strength of a heart and the importance of compassion and endurance are what enable me to keep getting up day after day and working hard to help my daughter. I accept that she has Autism, but I haven't and won't give up on her. I once heard a mom say that if all her son could learn to do was ride a bike, then she would help him be the best bike rider he could possibly be. That's how I feel about my sweet Avery Grace... whatever she can do, I want to help her do it as well as she can. Whether she ever talks or not.... I will figure it out, and I will empower her to be all that she can be. I will make sure her voice is heard... even if you never hear a sound.

Walking Again...

For the first time last November, I decided to invite some friends and family to walk with us in the Dallas/Ft. Worth "Autism Speaks" walk. We were able to raise some money for something of vast personal significance to us, but more importantly, we were astounded beyond words at the loving support of our dear friends and loved ones who took time away from their own busy lives and agendas to come help us BE Avery's voice.

Autism can take on many different faces. For some kids, the disorder is mild, and even hard to distinguish with enough time and therapy. For others, like Avery, the disorder seems to take over. Impacting every moment of our every day.

Avery is very disconnected and almost always completely in her own world. She has trouble with every aspect of development, from large and fine motor skills, to body awareness, to even the most simplistic forms of communication. Climbing stairs, using utensils, walking with coordination, and imitating even the most simple sign are very very challenging for our precious four year old. She (and we) work tirelessly to join in her world and to help her find her way in ours. We won't give up. And we will continue to be her backbone, her hand to hold, and perhaps most importantly, her voice, until she can find her own.

So this year, again, we will walk for her. To support and encourage her on her journey. She didn't ask for this, and she deserves more.

Avery deserves words of support and encouragement even though she can's speak them. Avery deserves attention even though she often can't seek it out. Avery deserves personal rights and advocacy even if she doesn't know it, and Avery deserves compassion, love and awareness... lessons she teaches us everyday in her own unique and special way.

She deserves more.

When I read words like "every 20 minutes another child is diagnosed with Autism" my heart sinks. I literally feel a lump in my throat and a pulling at my heart. When we heard those words, though we already knew it, we became different people. In that instant.

She deserves more.

As we drive her to school at the crack of dawn, then onward to therapy every afternoon and even on Saturdays...

She deserves more.

As we dispense countless medications, supplements, spend hours in a hyperbaric oxygen treatment chamber, search for diapers large enough to fit her, and time and time again help her remember simple tasks like not throwing her sippy cup and trying to use a fork.

She deserves more.

As we long to connect with her. Wait for her to look us in the eye. Make attempt after attempt after attempt to "play" with her, and one day... maybe one day, hear her words again.

She deserves more.

She deserves to be heard. To be understood. To have the same benefits and rights that healthy kids have. To have fun. To connect with us. To share with us.

So I invite you to check out our team page on the Autism Speaks website. I am going to walk for her. It is so simple, just a short walk, but at least it gives me one more thing I can do for her. To do right by her. It gives you all something too. Even if all you do is look at her team page, and remember how devastating it can be to lose your child into this neurological disorder...it gives you knowledge. So next time you see a little kid having a tantrum, not following directions, not responding, wearing diapers though he seems to old, or not looking or talking to you... you will remember. Remember Avery. She deserves that.

Autism Awareness is why I will walk. Avery deserves it.

Please visit www.walknowforautismspeaks.org/dfw/averysarmy or click here

Evolution of a dream

When I gaze lovingly at my sweet newborn baby girl, it's difficult not to go back to the first time I had a baby, and the hopes and dreams I once had for her. Back when I was a brand new parent, I was naive with optimism, and held the same assumption that most new parents maintain... that my precious baby girl would be smart, happy, and.... normal. Her dad and I both hold post graduate degrees, we come from educated families, athletic backgrounds and in many ways, sheltered and "charmed" upbringings. Why wouldn't our new daughter be anything but perfect? I had dreams of playdates, dance classes, soccer and basketball games, gymnastics, honor roll, school plays and so on. I had already picked out her preschool, and chosen carefully where we would live so the public school system would be optimal for her certain niche for academics. What a jackass I was.

As my beloved first born began meeting her developmental milestones, I was charting them one by one, videotaping with pride and documenting dates and skills. I can honestly say with 100 percent certainly that for the first blissful 12 months of her life I had NO worries about cognitive skills, neurological impairment, autism, apraxia and so on. Given my profession working with these kiddos and families, I was sure that since I had no indication of anything wrong by 12 months, that surely we were out of the woods... so my dreams for her continued, and I think Bryan and I even discussed opening a college savings fund account.

Even now, when I look back at pictures of Avery's first year, I can't help but be nostalgic about how "happy" we were, and how her diagnosis and subsequent developmental nose-dive have forever changed us... in every way. And how even now, how having a child with a disability colors the way I perceive almost everything, including my relationship with my two other daughters... and everyone else for that matter.

Then as time marched on, and I became slightly more aware of what was really happening to my precious golden child, I thought... ok, so maybe she will need an extra glass of wine to get through social events when she get's older... or, maybe it's just a matter of time before her understanding and language "takes off." Afterall, I had seen other kids with Autism tread beautifully through their toddler years becoming quite verbal and capable of many skills. Then a little later, when we were still waiting for the ever illusive "progress" I remember seeing a young woman of few words bagging groceries at our local supermarket... and I began to hope and dream that one day Avery might be able to do that. More time has passed, still waiting for the big leap in "progress" and my dreams are even more simple. I dream for one or two words. I dream that maybe she will understand, even if just for a fraction of a moment how much I love her, that she may be able to dress and feed herself, that she may one day brush her own teeth, or stay with us without wandering off, or understand to be afraid of pools, traffic, lakes and so on.

Slowly and steadily my dreams for her have drastically evolved into something I NEVER imagined. But I still have hope... it just takes a different turn every now and then. And believe it or not, my two other girls, especially my 2 and a half year old who has exceeded all expectations, and developed beautifully into a neurotypical preschooler... make me feel whole again, and better about myself as a mother, and a dreamer. They have renewed my sense of peace in a manner of speaking, and helped me realize that despite disability and differences, Avery is amazing, special, beautiful, and gifted in her own way... just as all children are.

So, the important lesson is that I haven't given up. Maybe I have "given in" to truth and acceptance, but I still have to believe that Avery is here for a purpose, and that I can handle the challenging life that lies ahead of us. I will still look into my precious newborns eyes as a dreamer, but it's a little different now. How couldn't it be? But with her birth, I have yet another renewed sense of hope... hence her middle name, and I can't wait to be a part of her journey as well... no matter where it leads.

Welcoming Hope

Presley Hope Beeson blessed our crew with her early arrival on August 30, 2010 at 9:43 am, joining her loving sisters Avery Grace and Kaylin Joy. The three weeks since her delivery have flown by, and the dust is just now beginning to settle. After a routine c-section, Presley had some respiratory issues and spent a couple of days in the NICU, which was harder than I expected, but she was where she needed to be.

Having one already medically fragile and disabled child puts moments like that into perspective, but also lets in a little more worry and anxiety than the average optimistic new parent likely experiences. As I did with my second daughter, I am sure I will have more than a few sleepless hours pawning over every tiny rash, fever, developmental milestone and so on.... but in the end, I feel extraordinarily blessed and happy to be the mother of three precious girls.

It's funny because growing up I always imagined I would have boys... since I have three older brothers and lots of nephews it seemed the norm. But I think we get what we are supposed to have, and I for one couldn't be more at peace knowing that Avery will have two sisters by her side as she grows up, and that they will learn tolerance, patience, acceptance and unconditional love first hand as they experience life with a disabled sister. I am certain we will face more than our fair share of challenges... but I remain pleased and euphoric about our little family and it's journey and purpose.

6 days after Presley's arrival, we were able to gather with some loving family and close friends to celebrate my dad's 70th birthday. It was a surprise party he didn't expect, and seeing his face as we shared in his special moment ranks at the top of my favorite family memories. It's hard for me to talk about my wise and loving dad without getting a little teary eyed. He is quite the force in my life and his critique, unwavering support, constantly evolving self awareness and world view inspire and amaze me. I feel so lucky to be his daughter and to get to learn from his words and more importantly his example. So celebrating his 70th brought lots of joy to my soul.

In these BIG life moments, it never ceases to amaze me how friends really can and do come through for us. In many ways it is like we have three kids ages 2 and under, so adjusting will be a bit challenging. The calls, notes, emails, meals and gifts are all so overwhelming and appreciated. We feel showered with love, and your support and friendship mean the world to us.

Finally, I can't close this post without a big shout out to our biggest supporter and helper... my mom. My sweet and helpful mom took a MONTH, yes folks, a month off of work to come be here and take care of my big girls. I can't just leave Avery with anybody, and my adoring mom burned the midnight oil with us, made lunches, meals, endured carpools, therapy, doctor visits, and so much more. We may never be able to repay her for all of her hard work and love, and we are forever grateful and humbled.

So now here we are, the five of us, getting adjusted to our new lives. All I know for sure is that it is now and will be chaotic... but I love it, and I am surrounded by generosity and support, which is such a gift.

You may have noticed our BLOG ADDRESS changed and is now: www.gracejoyandhope.com

Please check back from time to time if you get the chance... I'm sure I will have plenty to share when I get the chance!

Is she really that Different?

Without a doubt, the question most people ask me when checking in on Avery's progress is whether or not she is talking yet. I would say that it happens about once a week or so. It doesn't bother me, in fact, it usually gives me the opportunity to share a little bit about how Autism effects Avery specifically, and about how we have learned to let go of unreasonable expectations.

Long before I had a daughter with Autism, most of you know that I was already in the "business." I had completed graduate school and worked with countless families and children on the autism spectrum. Whenever I run into an old family that I haven't seen in a while and share Avery's story, they usually leave open-mouthed, astounded at the irony of it all. Believe me, I am equally astounded, and I have been dealing with this for over two years now!

Anyway, the knowledge I have about Autism and child development in general isn't always the blessing you might imagine. I can tell you that Avery is a LONG way from talking, because in order to verbally communicate, dozens of developmental foundations have to be in place first, and for Avery, we are still working very hard at those foundations that Autism has taken from her. She had them at one time, and one by one after she was about 14 months old, she lost them. She has yet to regain most of the relationship, social, and communication skills she had as an 11 month old. Sure, she has made some progress in other areas, but this is a marathon not a sprint, and if I know anything at all, I know that we will be fighting for her to come back to us for a very long time to come.

Another unknown to many about Autism is that as a brain disorder, it CAN (and does in Avery) impair MANY functions of the body and immune system. Most of the research you read now points to Autism being a systemic disorder, and I can assure you this is true for Avery. Nothing she does is "normal." From eating, to walking, to responding to any sensory stimuli, to comprehending, to awareness of herself and others... she in incredibly impaired. Even how she responds to illness, pain, and how she sleeps... it is all VERY different from a neurotypical child. She needs medication to sleep, can slam her fingers in the door and/fall flat on her face with only a whimper... she would wander off in a heartbeat if we let go of her hand, and she has no awareness of how her actions might impact another person. Autism, especially when paired with her autoimmune disorder, (and having mastocytosis made her 10 times more likely to have Autism according to new research) makes fighting illness incredibly difficult, and having seizures during her lifetime probable. The whole package can be mind boggling and completely overwhelming. I know more now about the body, immune system, mitochondria, and so on than I EVER imagined I would.

Another question posed to me all the time is whether or not I believe vaccines had anything to do with Avery developing Autism. This is such a touchy subject. I usually skirt around my answer, and say something about how I believe vaccines are safe for 99% of the population, but that for a kid like Avery, whose immune system was already compromised, that fighting the live viruses and preservatives present in a vaccine was very hard on her body and brain. She would ALWAYS run a high fever for days after a vaccine, and her body would ALWAYS be covered in hives. Not to mention that by the time she was 1, she had been on 17 rounds of antibiotics for constant ear infections and strep throat. So my answer is that I don't know. I DO know that most kids do fine with vaccines, but that for my kid, it could have been a part of her downfall. I think the jury is still out for kids like Avery who start out with a crummy immune system. I will tell you that Kaylin has yet to have the first shot, and when we do start them this fall, she will only get one at a time and only a select few. She is 100% healthy. I absolutely believe that vaccines are not a one size fits all kind of treatment. Just as some kids can't have penicillin (like Avery for instance) some kids are GOING to react to a shot... it says so when you sign the waiver. The risks are right there. Just weigh your family history and tread carefully.

So there it is, no, Avery is not talking, and yes, I think vaccines (the huge number at such a delicate developmental point in life) may contribute to Autism in some way. I also think just as some of us are genetically prone to develop diabetes, some of our kids are genetically susceptible to developing Autism... and some environmental insult, be it a vaccine, a virus, an environmental toxin or whatever can push them right over the edge... shutting down a protein necessary for brain function or whatever. But I DO NOT believe that Avery was "born" with Autism. I wish you could have known her as a baby. I have awesome video that I RARELY watch of her meeting all of her milestones and connecting to others beautifully. When she began to drift away a part of me went with her. And I can also tell you with certainty that it is NOT something you just "get over." As our children age and their peers blow by them and continue to thrive, the wound keeps re-opening, and sometimes the pain and sadness seep in again.

It does "get better." Not necessarily the "autism" but the way we cope anyway. New challenges ALWAYS present themselves in everyday life, but we move forward. We learn how to manage and remember that as parents, our love is absolutely unconditional.

Everyday I am BLOWN AWAY as I watch my 2 year old daughter develop normally. She talks in LONG sentences, can tell me about her feelings and her pretend play. She stays with me physically and mentally, she took all of one weekend to potty train, she runs and jumps and protests and manipulates. And thankfully, she evens me out from the overwhelming grief I was enduring before her presence. Sure, she is hard in her own ways, but not emotionally. It is my hope that her strong will will continue to lead her in the right direction, and one day help Avery. She too loves her sister, despite her sister's inability to reciprocate. I hope that she too will learn the magic of unconditional love and the importance of tolerance and support.

Avery is THAT different. She is also a beautiful and amazing little girl who has touched countless hearts. She is so much more than her disabilities. She is pure love.

The daily grind

I find myself counting down the days until the end of summer. I never want to wish time away, but the heat, the end of the pregnancy, the lack of structure and long days seem to be dragging on and on. I most certainly didn't pick the ideal place to live given that I prefer a cooler climate, but in many ways Texas has become home to me, even though I still miss Atlanta from time to time.

Home is no longer where I come from, but now is who I have become. The life Bryan and I have created is precious, and though in many ways this life is not what we would have chosen or expected, we cherish it nonetheless, and are trying like hell to make the most of it.

Since the time my life has been forever altered by my beautiful daughter's disease and disability, I have been working really hard to focus more on the "big picture" and not the daily struggles. I write about the big picture all the time. When I speak of gratitude, abundance, perspective, and even grace... I am able to see beyond the daily grind, passing frustrations, moments of overwhelming sadness and helplessness, and see the beauty in the life I lead. The beauty in disability. The beauty in relationships, and the joy resulting from heartache. This focus has enabled me to cope, and find meaning and purpose... but it doesn't mean I don't still lose it from time to time.

Afterall, I spent 30 year or so projecting my future and living for tomorrow... so learning to live for today, not borrow trouble, and give up trying to control the unknown is a hard habit to break.

The only thing I know for sure is that I don't know much at all. I can live and grow and learn from my experiences, and for the most part, I can choose my attitude. I can try again and again and again if I don't get things right, and I can create hope and live in peace as long as I keep my perspective in check. The struggles my daughter and I face, and will continue to face will surely be there to meet us, and I can keep going, or give up. For her sake, I will not give up. I don't have all the answers. I don't even know all the right questions to ask. I don't know how to rid my anxious mind of worry, doubt and sadness... but I will keep trying to replace it with the lessons bestowed in the "big picture."

Not all our days are good ones. In fact, it seems lately everywhere we go we get more stares and glares. Avery now outwardly appears different and disabled to all who encounter her, and that has been a little tough to swallow. But day by day I am learning not to let the small stuff... or the "what she can't do's" ruin my precious time as her mother. I suppose in many ways this is all part of acceptance. I accept that Avery has many limitations... but I also accept and love her no matter what the day has been like. Whether she has moved forward or backwards. Whether she has suffered from another unexplained fever, had puzzling lab results from bloodwork, is covered in "spots" or mastocytomas for some unknown reason or not. I can't control it. I can only work hard to maintain sanity, search for answers, and love my family with my whole heart and soul.

So as the summer days drag on, I am optimistic that within them I will share thousands of precious moments with my two daughters, before they become three. I stay so busy at times I can hardly see straight, but within the daily grind there is always time to be grateful for the positives. I spend far too much time worrying that I am not doing enough for my girls... and my mission for the next few weeks before our family expands is to try to let that go, and just continue to do the best I can and let it go at that. It's harder than it looks, but surely I can do it.