Christmas Words

Jolly. Merry. Joy. Peace. Rejoice. Believe.

I love Christmas time. Year after year, I wait with anticipation for that time of year where we gather with family and old friends, and celebrate. It's magical. For the life of me, I can't remember many gifts I have longed for, but I do have great memories of tradition, being together and soaking up the season. This year, like every other in my life since I was Avery's age, we will be in Atlanta for the holidays. I am excited for Kaylin to have her first Christmas where Avery had hers, and to make it special in every way we can. Avery and Kaylee don't "get" Christmas yet, but, they do understand some of the most important aspects of it.

My girls love to laugh. They are so JOLLY and sweet. They make everyone around them MERRY, and bring so much JOY to our hearts. We share moments of PEACE and silence together, where we can throw aside our shortcomings and just breathe. Every connection we have with each other is cause for REJOICING, as we know they don't always come easy so we better relish in each moment together. And perhaps most importantly, they BELIEVE in a way only the innocent can. They have no idea what lies outside their little worlds, and there is something so magnificent and wondrous about their simplicity.

I once heard someone say that "Autism is a blessing." At the time I thought that was crazy. But now I see what they meant. Everyday life is so fantastic from my daughter's perspective. The smallest things make her flap with delight and excitement, and she lights up when her world makes sense and is in order. Her innocence is refreshing and pure. Her existence has blessed us beyond measure. That being said, we will go to whatever lengths necessary to ensure that she has a complete and fulfilled life. Even if we have to throw half our income into her treatment. We see no better way to spend our money than on the well being of our children.

So though we may not lavish them with toys and gifts this year, we will remember how truly they define the meaning of Christmas. How the best gifts of all can't be seen or touched... but felt in the time spent together and the warmth of a smile.

Thankful

Well, This year it seemed like Thanksgiving came and went faster than the speed of light. It was a whirlwind of affairs, and we enjoyed the company of our family tremendously. After a week of everyone in the Beeson house being sick to some degree or another, somehow we all pulled it together in time for the crowd, and made a meal and memories that we will not soon forget. Instead of writing one of my typical entries, I am instead going to attach several pictures to document the weekend, and just say how extraordinarily grateful we are for our circle of family and friends who are so loving, generous and supportive.

And a wave makes it all okay

The strength of your character is truly measured when you face your darkest, weakest moments. Our darkest moments have certainly been seen in the past twelve months, and I really feel like we are coming through it in a blaze of glory. This week we have endured Kaylee's first ear infection, a kidney infection for me that landed me in the ER for several hours, and a croup so bad with Avery that her lips were turning blue and she is now on steroids for a few days.... all this and we are about to host Thanksgiving for a large group in less than 48 hours. But you know what... none of that even begins to compare to the utter JOY we are experiencing as we watch Avery consistently wave bye bye, start to imitate some words, grab our hands over and over again to play ring around the rosy, and finally look.... really LOOK at us and smile from time to time. Who cares that I have to follow her around with a can of Lysol and put a health hazard sign on the door. My little girl is, dare I say, coming back a little bit. Over a year of regressing backwards.... and finally, a nugget of hope to hold on to.

This Thanksgiving I am more grateful than ever before in my life. Grateful for my dedicated, loyal, loving husband, for my unique, special, sweet girls, for my generous, and all involved parents and for extended family, for friends that would move mountains for me, and even for Autism. Autism has shown me a way to see beauty in the smallest ways. To really "get it" I think. I am humbled and thankful for all the experiences that have brought me to the point of evolving into a better mom, and therapist. So this Thanksgiving... remember that it isn't "things" that we should be so grateful for, and it isn't even just "good luck" that we should be thankful about. It's the crap in our lives that makes us stronger... that's what is truly magic. It is what REALLY teaches us how to live.

On a side note...
I spent 8 years of my life "training" to help kids and families with Autism. Now I get to use that "training" in my real life. After 3 years of work, I am FINALLY, and officially a certified RDI consultant. Check out my name on their website! There are only eight consultants with this speciality in the state of Texas. I am not sure I am ready to dive fully into it and take on a full load with my current priorities, but I am a bit proud nonetheless.

http://www.rdiconnect.com/RDI/consultants.asp

In the Present

I wonder how many times in a day I think back to the first year of Avery's life, and try to hold on to the memories of how she was... of all that she "used to do." I also wonder how many times a day I think ahead to what is to come, pointless really, because who really knows. I worry needlessly about struggles we haven't even begun to encounter yet, and quickly try to redirect my thinking to what is happening right now. I try to remind myself time and time again to live in the present.

On one hand I wish we could freeze time. Today Avery is still only 2 and a half. It's okay that she is still in a highchair, still has to be spoon fed at times, and still doesn't talk. It's pretty obvious that she is different than most two year olds, but the differences aren't drastic yet. On the other hand, I want to fast forward to when she will be verbal, when she can do more for herself, to when she can share her joys and sorrows with me. I know she will always have Autism, but I also know that the sky is the limit for her. I KNOW that she will make progress.

But lets get back to today. TODAY is all we have. It is a beautiful day. TODAY Avery waved bye bye THREE times to her beloved therapist. TODAY Avery said three words... sticker, uh oh, and bird. TODAY Kaylee is babbling and cracking up at silly faces. TODAY Avery's face lit up with smiling anticipation as she was walked to the car after preschool where I was waiting with open arms to greet her. Sometimes people spend way too much time focusing on what they cannot do, and/or on what they cannot do anymore. Avery's therapist was making a great point to me when she said " I USED to be able to put my legs behind my head... can't do it anymore, and I am not going to worry about it." I can't run a marathon, I can't win a spelling bee, I can't play piano. I wish I could, but I don't worry about what I cannot do... I can do a whole lot, and so can my precious two year old. She can walk, she can laugh, she can do ring around the rosie, she can do puzzles, she can follow some simple directions, she can paint, and she can bring happiness like none other to those around her. I am so grateful for all that she CAN do. I am so blessed by all she is teaching me.

A look.

Bryan and I have often said that when Dora the Explorer is on TV, our house could be burning down around her and Avery wouldn't notice. She LOVES her some Dora, and a few other Noggin shows as well. Just a few minutes ago, Bryan woke our groggy girl from a late afternoon nap. To avoid a "meltdown" we put on her beloved Dora while she thaws out and drinks her rice milk. I walked in after laying Kaylee down for her nap to join my sweet girl on the sofa while she watched... we always hold hands and snuggle, but today... she gazed at me.. for like 5 whole seconds with a big smile on her face... as if to say "Hi Mama... thanks for sitting with me, I am so happy to see you!" Avery often "glances" at me and Bryan... to check in or make sure we are still there... but a gaze, a true gaze is rare. Rare and precious. She has been doing this from time to time this week and I love it. It isn't something measurable on a developmental assessment, or something many of you with "neurotypical" children can even really understand or appreciate, but to me it is a step towards the holy grail. It means she is connecting.

Earlier in the day we went to a birthday party. They are getting easier for Bryan and I to tolerate... especially if we bow out a bit early before Avery is expected to sit and eat pizza and cake... neither of which she will touch. It was a bounce house place with several types of equipment for the kiddos to play on. There was a big slide, and I hiked up to help Avery get to the top (since her motor planning/strength still prevents her from doing this on her own) and watched her slide down the big slide. Before I could reach the bottom, some friends of mine helped her off and she was visually checking in with their FACES to find me.... and once I reached the bottom, she looked right into my face and was relieved, and we went to the next thing hand in hand. I know it seems silly to celebrate such natural human tendencies... but for 15 months we have been watching Avery slip further and further away from us, and now, even if just for a few moments of each day... just maybe, she is finding her way back. We are here sweet baby girl.... and even if it takes a lifetime, we will be waiting to welcome you with open arms.

Dressing Up

Halloween came and went without too much commotion. I admit to being a little sad to see that Avery didn't "get it" at all yet... but then remembered all that I have learned over the past several months and decided to celebrate just being together as a family.
Halloween is the one day a year when it is okay to admit you are trying to be something you are not. It's an interesting concept to ponder. Everyday in the community I live in, people are trying to demonstrate an "image" of perfection. We live in houses above our means and dress our kids in clothes to expensive for the few minutes they actually wear them, all so that we "appear" to have it all together. I am as guilty of this as anybody, maybe even more so. I can even remember saying recently that although Avery may have Autism... "she will always look cute dammit!" I guess that is something I can control in this uncontrollable world I reside in. What I am trying to do through this blog and in my personal journey through this unpredictable world we live in is shed my costume, and really open up about the pain, joy, heartache and victory of living in a imperfect world blemished with disease and disability. To show that even in our darkest moments, there are little blessings that add so much more to our character than a fancy car or a fabulous wardrobe. The more I live and learn, the more I realize how little value "things" and "status" really hold. Comparing ourselves to others, in any form or fashion, is pretty pointless. Being truly self aware on the other hand, and focusing on our own growth and strength, is what makes us better individuals. But even being "individuals" isn't really the point. What really matters is our relationships. How we love each other, and how to do so without judgement, criticism, conditions, or expectations. So each day I strive to be a little less "dressed up" and a little more real. Real about my family. Real about myself. Real about my feelings. Real about what really matters. No costume needed. :)

Perspective to reality

When I was a kid, and still to this day, my mother has a saying framed in her house on "attitude." I can't remember exactly what it said, but the premise is that we can choose to have a good attitude. Pretty simple really, but harder than it seems when the going gets tough. I think about this quite a bit, and about how to really change my perspective when examining my reality. This involves more than a shift in attitude, but an entirely new way of looking at what really matters, and what life is really all about. It's not about 'what other people think' or material things or even accomplishments. It's also not about what we "can't do." I have to re-focus on relationships as being my # 1 priority. But here's the kicker. My child has a REALLY hard time "relating" to anyone. She does better with me and her Dad than anyone else, but for the most part, avoids interaction at all costs. So now what? Now is when I change my perspective. Here is how it works: she's different... and that makes her unique! She doesn't look at us too much, but when she does, the light in her eyes is glorious. She flaps her arms when she is happy... so she can express emotion! How wonderful is that! She is a picky eater... but she doesn't complain! She can't talk yet... so we don't have to deal with talking back! and so on. There is always a positive side... sometimes we have to hunt for it, and in some circumstances we may not know for years or even decades what it is... but just knowing that it is there is what makes each day so beautiful. To some extent, we really can choose how to react to and think about things. Sure, we all grieve for the "what could have been" but I am choosing to celebrate what "is now." Right now, Avery is happy. She loves birds, airplanes, trees with moving leaves, swings, little people, ANY penguin, trains, music and going bye bye. She is here with us, and I can choose to enjoy her, (while also working tirelessly to help her) or I could choose to live in self pity and anger, constantly looking and thinking about what she can't do yet. So, I celebrate the ability in her disability. Am I "happy" that Avery has TWO debilitating conditions (Autism and Mastocytosis)... of course not. I hate it, and I will admit that several times during the day I have to take a deep breath and snap myself back into positive thinking mode. But, today is all we have... so why not make the most of it. (and all this coming after a weekend spent with typical children!) Wow, how far we've come... and it's only just begun.

My two little pumpkins!

Enjoying each day.

Fall has officially and finally arrived here in Frisco. We are as busy as ever, but trying to remember to take out time in each day to enjoy special moments with each other. Avery is making some progress, especially at her preschool where we are so fortunate to have two loving teachers and one incredibly special shadow helping out our sweet girl as she learns how to be a part of the class. Regardless of the "why's?" that we all have when life doesn't go our way, we are certainly blessed and grateful for the friends, family and amazing therapists who bring us so much hope, love and support. I have more to write about later, but wanted to post some pictures in the meantime of our recent trip to Oklahoma and a few others. My brother and his family were so thoughtful and welcoming. My niece and nephew are so natural, helpful, and loving to my two girls, and we really enjoyed spending some time with them.

Without conditions. period.

So I skipped a week of writing... good thing there is no actual "deadline". It's been a busy week with my mom, Avery and Kaylee's beloved "Grammy" here to visit and help out. Thank god for my mom. She is my rock, and she is the greatest teacher of all on how to love unconditionally. Who knew how incredibly valuable that lesson would become in my life as it is now. The love we have for our children is like none other. I have written of this before, and truly believe that on many levels our children's souls are somehow connected to our hearts as we walk our journey through life. When they feel pain, we feel pain, and the same is true of their joy and success. But on some level, as children age, it seems like expectations come into play as far as being "proud" of them. I see parents all the time demonstrating this pride, as they talk of their kids accomplishments, their successes, and so on. I am sure that their love is not "conditional," but sometimes one would wonder in hearing them talk. Having always been a little bit selfish and pretty accomplished myself, I totally GET the need for approval and trying to earn love and attention. So in the big picture, Avery is teaching me, and all who know me and her on what it means to really take OUT the conditions. I approve, applaud, adore, and am proud of Avery every single day. Does she give back that love and attention? Sometimes, and in her own special way... and that is enough for me. It has to be, or I would live in a very dark place. I know that she is here for a reason. She is a gift and a blessing just as she is. Does that mean I lose hope in trying to heal her? Of course not... I want Avery to be all she can be, but as I live through this experience, I am trying to be realistic. I have had hope for Avery since the day she was born. One year ago I typed in my iphone all of the words Avery was using. She had lost a few at this point, but she was still able to consistently use about 15 words. She was still able to point and do a few other gestures that she ultimately lost to Autism. I remember being stressed as I wrote the list, but thinking... "things will be different in a year... she will come so far." Boy was I right and wrong. Things sure are different, and though she has made gains in some areas, for the most part she has been in a major state of regression... losing all of her words, becoming a sensory mess etc etc. But I hold on to that hope. As her mother I owe her this much and more. I KNOW that she will likely progress as she gets older, but my love for her is hardly conditional upon that progress. I love her without expectation, without conditions. Period. And so does her dad, and Grandparents by the way. So I am starting to "get" the big picture I think. Maybe for us, Avery is here to teach us all about how to love. Lord knows Grammy already knew this, but for the rest of us caught up in the hustle and bustle of sports, grades, accomplishment and competition, Avery brings us back to what is REALLY important. Just loving her for the sake of love itself. How beautiful and perfect that lesson is.

I miss her.

I have thought of a hundred things to write about this week. But what consumes me the most at this very minute is the longing I have to truly KNOW my little girl. When Avery was a baby, up until she was 14 months old or so, she was full of personality. She still is I suppose, though it is hard to decipher what is "autism" and what is "personality" at this point. She was full of light and wonder, and was so connected and involved with us every minute of her waking life. Over the past year or so, as she has become more and more disconnected, I have wrapped myself up in how to help her... how to treat her... how to bring her back.

Earlier this week a new show premiered called Autism x 6 about a family who have six children, all of whom fall somewhere on the Autism spectrum. If you have a child with Autism... don't watch it. For those of you who want to know more about the disorder, go right ahead. It was pretty devastating to me. To see their 6 year old non verbal daughter, still in diapers, dance around on the kitchen table, seeming completely unaware of her surroundings was more than I can handle right now. I am in the fight of my life, and I don't want the loss to look like that. From what I can tell however, this family knew little of early intervention. I know better than most how crucial early intervention is to the potential living in the hearts of our children. I wasn't born yesterday and I know there is no "cure" for Autism or Mastocytosis for that matter... but it doesn't mean I give up hope. I will keep trying, keep fighting, and keep searching to get my sweet daughter back. I love her to pieces just as she is... but I still miss her. I will miss her everyday, every minute of my life. She brought music to my soul. Though the melody has forever been changed, the song is still present. Still playing. Still growing and changing as time beats on.

A good week.

There is often a rainbow when the sun appears after a great storm. Not always a big, full arc shining colors rainbow, but pleasant to look at nonetheless. Sometimes I am angry at my role in life, other times sad, but always grateful in some way for the incredible lessons I am learning, mostly about how to love.
I was so mad at myself on Wednesday for missing the Oprah show which had Jenny McCarthy on talking about her newest book on being a mother to a child with Autism. I caught the tail end of the show, and heard Jim Carrey (who knew he was such and introspective, deep thinker!) say something I think is great. He was talking about how hard it was at first for him to connect with her son. Here's this guy, who can make ANYONE laugh and react in some way, who said "I could have been on fire in the room and he wouldn't have noticed." Then he said something I am going to hold on to. He was talking about what kids with Autism are here for. He said... "These kids [have] come to show us how to go somewhere deeper as far as loving. They show us that we have to take our expectation out of the equation and just be there because we want to be there for them," he says. "What I learned is to kind of sit back and try to connect. If it doesn't happen, it doesn't happen, but just be there for them."
Isn't that a great attitude to have.
I adore my children. That's what makes this all so hard at times. I want more than anything for them to be healthy and thrive. But I also need to work on ME. As I work tirelessly to find answers, I also need to just sit back and remember to enjoy them. MY attitude is something I DO have control over, so I am going to really make an effort to stay jovial and hopeful. To heal and live fully. To put positive energy out into the universe and sit back and see how it all unfolds. Because we really are blessed.