On the Mend

Well, one week later, the hives are down, and Avery is coming around again. For a few days there we were really concerned that she lost several skills... and though they are not all back yet, today at least she said a few words when pushed, and waved once. She continues to have days where she is more "off" than others, and the roller coaster ride called Autism continues to throw us for a loop. She will stay on all four mast cell stabilizers to help prevent further outbreaks.... and we continue to search for answers. We are looking into the possibility of an adult stem cell transplant, as well as other biomedical treatments both natural and pharmaceutical for her seemingly extreme case of Mastocytosis. It is all exhausting.

Personally, I feel like I have had my own regression of sorts as we move forward. When I was a naive therapist with no kids of my own, I once asked a family who I was pretty close to if they were "out of crisis mode yet?" The mom told me at the time that, with Autism, life is always taking you in and out of that mode... and boy was she right. Time will heal us, and acceptance of our lot in life will once again come to show, but when your kids are sick, money is tight and you can't sleep at night for a teething baby and a toddler with Autism whose central nervous system are all out of whack... sometimes it's hard to maintain that positive outlook. I will keep trying though. I am frustrated and angry at the lack of progress, but I am so incredibly grateful for the happy, easy, and gentle spirit in my daughters soul. She continues to be my greatest teacher, I am just so hopeful for some sort of break for her. Some answers to how to help her. An inkling of proof that she will start to get better. THIS is the ultimate lesson in patience and accepting the unknown. I just wish I could have learned it some other way.

I took some pictures this week of my sweet girls that I will attach to this post. Kaylee is 8 months old. She is babbling all the time, waving, imitating and almost crawling. Though she is a bit more feisty than her big sister was at this age, it is hard to believe that Avery was reaching all of her milestones on time at this point as well... in fact, she was already crawling by 8 months. Now she can't look up without falling down, still can't run, and has a major over all disability with motor planning, in addition to the autism and masto. Talk about brain damage. But both girls bring me and Bryan so much happiness, love and inspiration. Avery is BOUND to make some progress, but you know what... if she doesn't, if she forever is who she is right at this moment... I will still be so grateful for her and to her for all that she brings to my life.

Not our finest hour

Usually I can sit down and just write. Write from my soul, letting my feelings and emotions take flight. Tonight I sit here, tired, sad, a bit angry and empty, and I am not sure what to say. If you read back a few blog entries, you will see that it seems as though our perspective and outlook has brightened. Though the diagnosis, and lets face it, the progress, have been less than marginal, we march on. We march with hope. We march with optimism. We march with acceptance, and a hint of fear and despair. This week has been a trying one. Letting that fear and despair eek in and color our happiness a bit dimmer.

It started with masto mania. Avery had a HUGE reaction to something... I think an antibiotic she was on for yet another round of tonsillitis. She has hives head to toe, and is suffering from the inside out as her mast cells in her GI track, brain, and skin have gone haywire. From vomiting to refusing to eat, our poor toddler who can't tell us what hurts has been in agony. It's enough to make a mother go crazy. So I went into research overdrive, and stormed into the doctor with a list of pharmaceutical treatments to try to get her Mastocytosis in check. You see, when your kid has a rare disease that NO ONE in your big city is an expert in, you have to talk with doctors around the country, research your tail off, and become an expert yourself. I know her body/immune system is attacking itself. I know that, by definition, autoimmune diseases create inflammation in your brain. I know Avery's Autism is a result of this inflammation, and I am terrified that when we have an attack like this, our outlook is grim.

Thankfully, our pediatrician listens to me. Over two hundred dollars later, we now have all four prescriptions to fight the Masto. We start the fourth one tomorrow. Keep your fingers crossed for us.

On another note, today was a work day for me. Most of the time I look forward to the short escape from my own crisis, and today was no exception. I see six precious and fun kids, all right around the same age as Avery, and all but one fall somewhere on the Autism spectrum. The one who is likely not on the autism spectrum has mostly sensory needs and all six of them are making fantastic progress. It truly makes me happy and proud. I love sharing their victories and seeing their parents light up at the smallest of feats. In many ways I feel as if I was born to do this... but on the rare day like today, my heart hurts a bit and though I feel tremendous success as a therapist, I can't help but feel like a bit of a failure as a mom.

Two of my visits today were at different preschools/daycares. The mother of one child I see requested I attend her child's dance class to help with transitions, following directions etc etc.
9 darling girls, all exactly the same age as my sweet Avery, dancing about, tumbling on command, doing short obstacle courses and sitting patiently in their chairs to await instruction. Even the child I see did great. She was able to move from each activity, smile, sing along to the music and giggle with her peers. I felt like dying. Even as I write this I can't help but want to bury my head in a pillow and cry. ALL of the children I see are verbal or are becoming quite verbal. ALL of them more advanced than my child. I am happy for them. I am just sad for us. Yesterday at a little birthday gathering for a friend, Avery was clearly the outcast. Thankfully, she doesn't have a clue, but I do. I see that the kids are starting to notice her being different, and are starting to shy away from her. It is a glimpse into her future, and I hate it. Like I said... not our finest hour.

So at this moment, I REALLY have to work hard to be grateful. To remind myself to not be so selfish, to take things day by day, even moment to moment, and realize that in the big scheme of things, this is just a bad day. Avery is a gift. She is the greatest teacher I have ever had, and I am blessed by every moment she is with me. I just want more for her. Mostly, I want good health for her. Something we all take for granted.

Holiday Letter

There is a great song in the theater production of “Rent” titled Season’s of Love that asks the question, “How do you measure a year?” The song goes on to describe the importance of measuring the year not in events or things, but in love. We have learned a thing or two about that in the last 12 months. Most of you reading this know the ups and downs the Beeson’s have endured, but for those of you who don’t know what I am writing about, I will recap.

The absolute highlight of the last year was the birth of our precious daughter Kaylin Joy on April 28th. True to her middle name, Kaylee has enriched our lives tremendously, and brought so much light and happiness into our home and hearts. She is such a blessing.

We also feel equally and incredibly fortunate to be the parents of our special angel, Avery Grace, who is now two and a half. Avery has had a rough 12 months, but what has remained steady is her delightful disposition and ability to give us all the insight to truly understand the power of unconditional love. Last January we had the scare of our lives when doctors feared Avery’s Mastocytosis (an autoimmune disease we already knew she had) had turned into Mast Cell Leukemia. Several tests and sleepless nights later, we were incredibly relieved to find out that she does not have leukemia at this time, though she will continue to be followed by her oncologist and several other specialists. Another complication of this autoimmune disease is that it makes kids who have it 7 times more likely to develop regressive Autism. Avery had developed beautifully her first year of life, and now has a diagnosis of full blown Autism. She is in several hours of therapy a week, as well as on a strict regime of biomedical treatment. The team of professionals dedicated to help our sweet toddler is the best of the best, and we are in a place where we are finally feeling hopeful for what is yet to come. Avery is so much more than her disorder, and we are so proud of her and all that she is. We choose everyday to praise, love and adore her for her spirit and her abilities, rather than focus on her disability. She makes me and Bryan better parents and better people. We have learned SO much from Avery, and we have so much hope for her as she continues her journey.

Bryan has been doing great at his job with Current Energy as their client services manager. He even won a big award a few months ago and gets lots of praise and acclamation for his hard work. Most importantly, he is also an outstanding husband and an amazing dad, which won’t come as a surprise to those of you who know him well. The love he has for his daughters is flawless and pure. He has taught me so much about how to stay calm in the midst of a storm and find goodness, hope, and optimism in the darkest of hours.

I am proud to say that I recently completed a certification in Relationship Development Intervention (RDI). I have been working on this for three years. Ironically, it is a certification specifically designed to treat children with Autism and their families. There are only 8 of us in the state of Texas at this time with this specialized training, and it is obviously an area of study of which I am extremely dedicated. I have been working in Early Intervention for almost 8 years now, and am grateful for the lessons I can now apply to my personal life! I do some contract work part time, and spend the rest of my time toting Avery to various therapies, breast-feeding Kaylee, or on the computer doing Autism research.

So as you can see, our year has been a busy one, full of emotions and rich with blessings. Our immediate and extended family has really come through for us, and the friends we have are the salt of the earth. So all things aside, if we measure our year in love, it has been the best year of our lives. But, we have come through it stronger, more fulfilled, complete and happy to be living for each day as we have learned to appreciate the little things in life that make it all worthwhile.

Happy Holidays dear friends and family. We hope all of you have a magnificent season, and a spectacular 2009.

Fresh Start

It's that time again. Time for new beginnings, resolutions, promises, and good intentions. Like most everyone, our holiday break went by too fast, and we are home again after an extended stay in Atlanta. It was a true break... a break from work, school, therapy, interventions, chores and worry... (well not a complete break from worry,) and I must say we needed it. Now begins a new year, and one of my MANY resolutions this year is to write more diligently... every week I hope... as it is my sanity, and my documentation of how far we have come, even if we are just in the prelude of our journey.

Kaylin had a fun first Christmas. She returns to Texas spoiled rotten and louder than ever, but her personality is really beginning to shine through and she lights up our lives and adds lots of noise to our melody.

Avery also returns spoiled with stickers and her beloved TV shows.... she will have a rude awakening come tomorrow when therapy and school resume and she is expected to "perform."

With a new year I see a time for hope. It is my prayer and my effort that this year will be a year where Avery makes progress, and stops regressing. Where the word "Autism" doesn't haunt us every minute, but makes us who we are and is simply a part of our family and something we cope with exquisitely. 2008 brought with it so many sorrows and a few joys. The ultimate high was the birth of our sweet Kaylin, and the devastating low was the diagnoses of Avery's multiple conditions. But all in all, we are optimistic. I don't think I will ever get over losing my perfectly normal baby into this heartbreaking disorder, but I am in a much better place to move forward and be the best mother, guide, teacher, and support that my children deserve. Bryan often says "she is who she is." I hear that, and I am getting better at coming to grips with it... but I also say... " I can't wait to see who she will become."

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. :)