Today

On any given day, even on this holiday "break," my child with Autism is THE busiest person I know. Her day usually begins with either school or her "second" school that she goes to on school breaks and Saturdays. Then she has 10 hours of ABA therapy, and 8 times a week she has OT, PT and Speech Therapy. Throw in some horseback therapy, some special outings and that girl is SCHEDULED.

So on a day (usually Sunday) of no therapy, Avery wanders the house, (she has no interest in toys or "play," is 100% non verbal and little to no interaction skills) watches TV, plays on her ipad (which consists of more TV or usually just the intro songs to favorite cartoons), swings on her indoor swing, wanders some more knocking lots of things off tables and counters, and climbs on furniture. We have several baby gates, because stairs are death traps to her and we have two sets. We feed her, change her diapers, start her new beloved shows.... and make a day of it. We ALWAYS try to take her out somewhere, be it to Target or the mall, but given her inability to stay with us or be aware of her body in space, we have to have a death grip on her hand or have her in the cart or a special stroller that she can barely squeeze into. She loves being out though, so no matter how hard or stressful it is on us to bring all three monkeys out and about, every week we do it again and again... because she loves it, and needs the activity, and so we don't all go bonkers redirecting her ten zillion times at home so she stays safe or doesn't swing into the baby for the umpteenth time, kicking her to the ground... purely on accident since she doesn't really seem aware that the baby is around most of the time.

Staying busy is a coping mechanism I suppose. The more "active" we are pursuing help for our beloved first born, the less guilt we feel about all the things she can't participate in or can't do. So on a holiday like Christmas where NOTHING is open and our hardships are always exacerbated by how we "think things should be" I find myself wishing time away and looking forward to getting back to the regular routine where the busyness clouds the sadness, and the activity silences the heartache.

I don't want to spend my life or even one more minute wondering what things could be like for us as a family if Avery's brain hadn't stopped developing on a normal trajectory and taken a hard left turn off of normal. But here I am, taking a moment to catch my breath when I see her 3 year old sister enjoying Christmas and all the festivities, and her "baby" sister pointing, talking, and interacting with us in a fully appropriate, silly and endearing manner. It still stings. I wish it didn't, but it does.

So often I think back to the "stuff" I worried about before Autism and Mastocytosis changed our lives forever. Before I worried about whether my child would suffer tremendously or even die young from her disease or if she would ever utter a word or learn to use a toilet. Those worries seem so silly now. So distant. And I fear that I'm forever hardened to be a little insensitive to others' worries and fears that are so simple by comparison. Thankfully, I am able to remember that life before... it wasn't so long ago after all... so on some level I can still kind of relate.

I lay awake most nights and try to let go of the anxiety and the fear, and try very hard to focus on our many beautiful blessings. Try to spin a positive out of whatever has me worried, and count the moments of the day that make it all worthwhile. Today, as my littlest girls were napping and while Avery and I had a few minutes for me to feed her lunch before therapy started, we had one of those very special moments.

In general, I will admit that feeding Avery is NOT my favorite thing to do. Sad, really, as when she was a baby I would nurse her for hours on end, soaking up her infant features and blissfully unaware of any imperfections. But now, chewing is difficult for her, and she cannot yet "bite off" anything and often spits her food out, or drops it on the floor as she doesn't attend to the action of moving food from the table to her mouth. Food usually ends up everywhere, and admittedly, I become frustrated and annoyed. Pretty much every single time. Thank god our therapists and respite care worker take over this task a lot... it really is better for everyone.

But back to today. TODAY, Avery was the only one eating so she and I had some one on one time with no TV on, no iPad playing music, and no other family members or therapists. TODAY she looked, and I mean REALLY LOOKED and SMILED at ME several times! She GIGGLED as I acted like I was going to eat her chicken, and she IMITATED her arms up in the air as I threw mine up in the air. I tickled her several times, and she INITIATED wanting more as she grabbed for my hands laughing and smiling. TODAY, I am reminded of a precious, unconditional, simple and 100% pure kind of love.

The day in and day out is crazy. It's so easy to get lost within the chaos, and forget that my child is perfect, just the way she is. Just because she is "labor intensive" doesn't make her any less of a person or less needy of simple, silly, love and affection. Don't get me wrong. We "love on" Avery all of the time. Sometimes she smiles. Occasionally she glances at us, but RARELY does she really look, really GAZE into our eyes and visually connect with us. It's such a simple blessing. Looking. Just looking. But to me, it MADE my WEEK. So there it is. An entire, wordy, lengthy blog about a look. About a moment I shared with my daughter today. But the biggest lesson of all is that SHE makes me better. She makes me appreciate the smallest feats. And as limited as she is in seemingly every way, and as much effort that we put in to teaching her the most simple tasks and functions... isn't it funny how much she is teaching me. Every day. How incredibly lucky for me. The "hard" just makes it all the more beautiful.

Beeson Holiday Letter 2011



It’s the most wonderful time of the year. Or so the song goes. As the days get shorter and the early evenings allow us to glimpse celebratory lights on homes, trees and buildings, I am always reminded about the many moments of illumination we have been afforded in the past months. Light equals happiness to me. A joy reflected in our soul that reaches out to others so we can share and spread our beatitude. Every challenge we face enables us to choose an attitude of joy and gratitude. The Beeson family has surely met our fair share of heartache, but we are in no way short on remembering the many lights in our lives for which to be thankful. That heartache serves to make us stronger, and allows for the simple moments of grace to be all the more glorious.

Our year has been chalk full of smiles, a few tears, and more blessings than we can count. Sweet Avery Grace is 5 now. I wish our every moment of almost every day didn’t revolve around her schedule of therapies, appointments and meetings... but they do, and we are surely grateful for the lessons learned from having a very disabled, yet beautifully simple and lovely child. Her laughter is infectious, and her smile can still bring warmth to a room. Her severe autism, apraxia, and mastocytosis still make her very limited in her abilities, and she needs constant care and supervision. Regardless, she is a beaming source of light, and somehow manages to lift us up with the touch of her hand and the occasional look in the eye. Her motor skills are improving, and she will soon have braces to help her re-learn a more functional way to walk. She will follow a few simple one-step directions, and loves to play on her iPad, which is actually giving her a voice for the first time. Thank goodness for technology! Avery is so much more to us than her disabilities. And even in the dark days, we remain hopeful and encouraged that her life has meaning and purpose beyond our scope of vision.

Kaylin Joy is 3, and Presley Hope is 1. Kaylin loves preschool and playing with her “buddies.” She keeps us hopping with her quick wit and affinity for trouble, but she is also a constant source of light in our home, and true to her name, spreads lots of joy to those she knows and loves. Presley is busy trying to keep up with our schedule and her sisters, and is certainly finding her voice amidst the chaos. She is talking quite a bit (phew) and is running around like she owns the place. Also true to her name, Presley has brought an abundance of hope and love into our hearts. Can you tell we love our girls?!

Other big news of the year is that we moved to a new (to us) home here in Frisco. The pool was a big summer hit, and we look forward to staying here for a very long time. Bryan has a new job as an indirect sales executive at Hudson Energy. He is very happy with his new company and position, and spends all of his “off” time helping with three little girls.

As for me, I run around like a crazy woman, toting Avery to 30+ hours of therapy in a week and to various doctor’s appointments. I taught a class over the summer, and am going to be working at a clinic starting in January accumulating the MANY required supervision hours I will need for a new certification I am beginning at UNT’s graduate school this January. I guess I just love school too much to ever quit! (although it’s been a nice break since I finished grad school- but I did have 3 kids.)

So that’s it in a nutshell. We stay insanely busy, but somehow manage to find peace and contentment in our circumstances. We choose to fill our hearts with gratitude, and try, little at a time, to spread our light with those we meet. We have so much to be thankful for this year and every year. Mostly for each other and our overwhelmingly supportive friends, respite worker, many therapists, and family. Wishing all of you a holiday illuminated with love and laughter, and a 2012 full of many bright blessings.

Where I Stand

I've never been too fond of confrontation. Not that anyone is, really, but I would say that more often than not, I will choose a middle ground, and work hard to be empathetic to the experience of someone else, and try to always keep in mind that everyone is busy fighting their own battle. Standing in the middle is a weird place to be within the autism community. I never knew this before Avery's diagnosis, and wouldn't know now unless I was experiencing it, but in a world where it would make sense for us to respect each other and our struggles, there sure is a lot of discourse, arguing, VERY strong opinions and oddly enough, a lack of support rather than an abundance of it.

Whether the topic is kinds of therapies, whose kid is "harder", what really defines "disability", vaccination, big pharma, verbal vs non-verbal, supplementation, or whatever, as a parent, you are really left to make your own choices because even the doctors and specialists can't agree... which only makes the parents all the more amped up.

In the last 3 and a half years since Avery's diagnosis, we have tried several varieties of therapy, and I can assure you there are pros and cons to every one. We have sought out genetic testing, DAN protocols, homeopathy, and so on. I have spent hours and hours every single week looking for something, anything that might help and shouldn't harm her. We have changed the way we eat, drink, supplement, and altered all of our kids' medical care. Why? Because at the end of the day, NO ONE really knows what the hell is going on with our kids brains. The actual numbers of kids diagnosed today is astonishing, and the exponential growth cannot simply be explained by better diagnostic criteria. But something is going on. Be it a genetic mutation intertwined with environmental toxins, or a straight up result of the crap sprayed on our food and injected in the little bodies of those with unhealthy immune systems... its a bigger problem than "just more kids being diagnosed."

But here I stand, in the middle, not blaming any one thing in particular, which believe me, in the Autism world can be a very lonely place to reside. Some in my community can find little to no joy within their circumstance. I am not judging them. I have my very hard days and have been blasted for being overly negative or whatever.... and to that I say... WALK ONE DAY in my shoes. Then insult me. Others find Autism beautiful, and can fully accept their child with little to no sadness.... these folks are chastised as well for being in "denial" and not pursuing enough therapeutic outlets for their child.... or their child must not really be "so bad." So no matter where you stand on whatever topic you are reviewing... you are likely to be judged. Well, if that makes you feel better go right ahead. Judge me.

I wish I didn't feel compelled to write about this. I wish that Autism didn't define most every hour of my every day. I wish Avery didn't need 30+ hours of therapy, respite care, and an ass ton of supplements and medications to help her function during a 24 hour period. But since I can't change most of these facts... I can stand my ground, rally up real, raw, authentic, unconditional support for mom's like me who need it, demand good therapy and care for my child, and march forward with my head held high. I can blow off the insults, and encourage others to be empathetic to what they also do not know. Just because I have moments of despair does NOT mean I love my child any less. I am acknowledging my grief, and then moving on. Do whatever works for you and leave your judgements at the door. I am tired of feeling taken for granted and that I have to walk around on eggshells trying not to offend anybody. If you don't like me, or don't value what I am about or what I have to say, please do us both a favor and stop reading this blog, de-friend me, lose my contact info or whatever.

What I know for sure are only a few things. Autism, as I experience it, can be very challenging. I can paint the picture anyway I want, but this is one hardship that stands the test of time and endurance. On the flip side of that, I CHOOSE to find the blessings underneath the hardships, and love and adore my daughter no matter her level of functioning. What I see as a privilege, others may view as a burden, and I may do the same from time to time. I have the right to bitch, cry, and change my mind. I am grateful for the blessings and lessons she teaches me, while at the same time am saddened by the loss of who she could have been. There is always a moment of greatness and light, no matter how small, that brings me through the dark moments and sorrow. And finally, things could ALWAYS be worse. Sometimes that little fact pisses me off when I am in the depths of my own anxiety... but it is true. I am here. I get to be a mother to three beautiful girls who I love more than life itself. So if you can put all that other bullshit aside, and remember to feed the love in your life, bring joy to others, be courteous, compassionate, gracious, and set the judgements aside... maybe just maybe you can find your own fulfillment, purpose and meaning.

The flip side of Progress.

It's easier to remember to blog when you have just been through a firestorm. Blogging has become a way of therapeutic reflection for me, a means to escape the moment of chaos, take a deep breath, and decide to choose gratitude over anguish, and peace over frustration and sadness.

I remember when Avery was first diagnosed with Autism. Although I knew she wouldn't "outgrow" it, I also assumed that she would be verbal, understand and follow simple directions, and at the very least be "with us" some of the time. I was mistaken. Well, at least so far.

I remember longing for time to fly by so that we could happily reach an "easier stage" when we didn't have to be 100% hands on all the time... yet here we remain, with a now VERY tall 5 year old, who is beautiful and loving, but very much developmentally below our 13 month old. Imagine a 4 foot tall 13 month old...(but without the imitation skills and social abilities)... it makes for some interesting measures in childproofing, eating, diapering, dressing and so on. I know longer wish time away. In fact, I wish we could pause it most days. Today I can handle this... even with poop smearing, curtain pulling, climbing that results in tumbles and falls, sleepless nights, random, inconsolable tears, silence.... I can do it. Not alone, but together, we are doing this.

I think a lot about what it means to truly live, verses to just exist and move through the motions. I worry about what Avery feels but can't tell us, what her life will turn out to be like, and how she is lost in her own body and mind... trapped if you will. And then I take a deep breath again, relax my mind if I can, and let it go. The truth is, we are so busy keeping Avery busy with therapies, activities, and so on, that sometimes it's easy to forget to sit back and gaze at our beautiful girls, relish who they are today, and let go of the day to day struggles.

I still have to talk myself through negative reports, bad days, evaluation "scores" and the "why me's?" Why not me? I AM in this, and would dare to even admit that I am a better, more complete person because of it... but then I get overwhelmed again when I think of Avery and her life, and it's meaning and then I ask... "why her?" I wanted so much more for her. I still do.

A bittersweet revelation we have had in the past few weeks has come in the way of discovering what Avery "knows." Since she has so far been unable to communicate with us in any way, we generally meet her needs as if she were still a baby, and guess at what she wants to do, eat, drink, play, etc. With the help of several therapists and her respite care provider, Avery is LEARNING to communicate on her iPad. Over a year ago we downloaded a fancy program called proloquo to go, and we have finally reached a point where Avery can answer some yes/no questions, make choices on what she eats, does and watches, and even rule out what does and doesn't "hurt." A big one when you have a non verbal child. Avery is categorizing pictures, matching, identifying colors, letters, people and so on. NONE of it comes easy, and she has to be prompted and sitting at a table, BUT she is DOING THIS!!!! So this is all great news, right? Well, yes. It is. But for some reason, it also pained me incredibly to realize that Avery knows so much, and has so far in her life been totally trapped inside due to her disability. She has had no control over any aspect of her day, and now I learn that she has opinions!! It's overwhelming, wonderful and heartbreaking all at the same time.

So here I am, "hoping" again. Looking forward to a day when Avery gets better and better at figuring out how to communicate with us. Avery may never talk. I haven't given up completely, but I am realistic and know that she will always be disabled. But the past few weeks, despite the broken arm, smeared feces, hospital discrimination (that's a long story) spilled drinks, thrown food, negative reports, dented walls and so on... we have found a glimmer of hope in her new found skill. It's enough to push us onward, and snap us back to the reality that Avery's life has purpose. Meaning. That she is a child FIRST, who happens to have a disability ALSO.

So even though I wish I could erase many events of the past weeks... I still wouldn't wish this time away. It's a time for hope. A time for appreciation. And a time for inspiration. Something better will come of it. I just know it.



*Remember that we are walking on November 12th for Autism Speaks. Please feel free to join Avery's ARMY and walk with us, or donate to our team on behalf of Avery Grace. http://www.walknowforautismspeaks.org/dfw/averygrace

Steps

Every single morning on our way to take Kaylin to school she moans and groans about how she doesn't want to go, and how she just wants to stay at home. Some days there are tears, others tantrums, but the message is always the same. Then, the minute we get there, her face lights up, she JUMPS out of the swagger wagon, grabs her backpack and literally RUNS towards the school and into her classroom... never looking back. I hardly even get a "bye, mom" once she is inside, and she quickly focuses her attention to her "buddies" and the toys. That's Kaylin for you. Feisty, fierce, dramatic, and glaringly independent. She is always two, or twenty steps ahead. In every way. That is how she has been since infancy, and I bet she takes it with her to her adulthood. Her pace is fast and determined, and no one better get in her way.

Her "big" sister on the other hand is on a different path, and a polar opposite pace. While Kaylin bolts ahead in every way both literal and metaphorical, the same is true about how Avery lags behind. Her steps are cautious, unbalanced, and uncertain. Thankfully, she is a very "go with the flow" kind of kiddo, but disease and disability have taken away most of her awareness of both herself and others, so when outside of the house or her classroom, her steps are never taken independently, and she always has someone guiding her by the hand, leading the way for her. Always.

So this is why in just a few short weeks we will gather once again to "walk" for Avery. An "ARMY" of supporters have gathered the last two years to show our family support and raise Awareness for Autism. Avery's steps may be slow and dependent, but when surrounded by love and support, she is unstoppable.

You see, every single day, we are reminded of how hard it can be to have a child as special as Avery. She cannot talk, so we are her voice, she cannot run, so we are her strength... but she can INSPIRE. She can remind you of how to celebrate real, raw unconditional love that doesn't always have much to give back in return. She can feel the energy of the people who gather to celebrate her, even though she is different and "disabled."

I will take a zillion steps for Avery. As long as I am breathing, I will do my very best to guide her along. To help her keep up in a world that isn't always accepting of her and her differences. I can't do it alone, though. Hard as I might try, I still need help. I may never be able to truly get over my child's brain "changing" when she was about 15 months old. It still haunts me at times... to think about who she could have been. But, thankfully, my precious 3 year old reminds me EVERY DAY to keep moving forward, and stop looking back. To live life with gusto, and let passion drive my actions and steps. Avery needs a sister JUST like the one she has. And I am sure Presley will find her place and be a source of courage, guidance and leadership for Avery as well.

So I would like to invite you to take a few steps on our path. To come out and walk as part of "Avery's Army" in the DFW Walk Now for Autism event if you can. In years past, our most precious friends and family took a few hours out of their own busy lives to lift Avery up. To raise hope and Awareness for a sometimes devastating disorder. Please visit our team page if you are interested, and even if you can't join us on that specific day, please consider making a donation to raise research funds and hope for kids like Avery. She needs all of the love, support, awareness, and guidance she can get... and collectively, we can really make an impact.

Visit our team page at
http://www.walknowforautismspeaks.org/dfw/averygrace

Fear

My sweet Presley Hope had her first birthday on August 30th. I'm not a good enough writer to adequately express the variety of emotions that this milestone generated. There was immense gratitude and elation that she is healthy, happy, and seemingly "on target" so far in her development. There was a touch of despondency that she is growing up, and no longer my "infant." And though I hate to admit it, there was also nostalgia and fear. Memories of my neuro typical 12 month old Avery who was also waving, talking, social and adorable flooded my mind as I planned and prepared for this one year celebration, which also uprooted grief as to who she had been, before her brain took a left turn off of the normal trajectory, and she spiraled into the very disabled, (yet still adorable and endearing) 5 year old she is today. I remember these feelings with Kaylin. I remember wanting to capture every word, every new skill for fear that she would lose them, and I would again be mourning a child who "used to be different." Thankfully, I was able to let go of that particular fear once Kaylin was about 18 months old and speaking in 7 word sentences... so now the waiting game with Presley begins... and I must admit that I am holding my breath a little bit... though so far she is doing marvelous.

Another looming fear over the summer was Avery's upcoming transition in to elementary school. It was a rocky start, but thankfully, we are three weeks in and I am feeling an enormous sense of relief as she is beginning to settle in and her teachers are learning how to work with her. We are very fortunate to have a team of dedicated therapists, teachers, and case workers all committed to helping Avery.

All too often I let fear control me more than I should. Letting go of that fear and having faith and confidence that we can survive and can be better because of unfathomable circumstances is often easier said than done. It all goes back to the absolute certainty that this life, that these moments we share... they are all a gift, and in order to discover true happiness and fulfillment, it is critical to have an attitude of gratitude. To remind yourself constantly of the countless moments in your life that make it all worthwhile. Without that appreciation, that humbling awareness... fear takes over, and nothing good can come of it. So today, or any day for that matter when fear grips you and takes a hold of your mind... remember that this too is an opportunity to choose love and gratitude over fear. Life is so much more fun and enjoyable when we decide to take control of our anxiety and sadness, and just be content, grateful, happy and at peace.

Rocked

Last night I was rocking my sweet baby P to sleep in a green chair we bought shortly after we found out we were pregnant with Avery. Three girls later, that chair has seen MANY sleepless nights, and soothed both me and my girls through some pretty trying hours. Hours where we thought we may never see a full nights sleep again... (5.5 years later we are still waiting on that one), hours where we feared for Avery's life, hours where we then feared for her and our future, hours where we calmed our babies and soothed our own heartaches, and hours where we cried happy and sad tears, redefining "struggle," "sadness," "grace," "joy," and "hope."

I've rocked my way through countless doctors appointments, evaluations, re-evaluations, dozens of therapies, therapists, heartaches and victories. I've closed my eyes and been so grateful for calm moments, the smell of my babies' hair and breath, the sound of their breathing. I've rocked through helplessness, anger, fear, and anxiety. I've rocked my way to finding peace... even if it is only a moment at a time.

I couldn't help but remember last night about how many times I have sat in that chair and reflected on the day, the circumstances, the cards we were dealt. I think my nostalgia comes on the brink of Avery's next step in her school life. As we are days away from her first day of "kindergarten." And I am feeling a little overwhelmed, sad, happy, eager, hopeful, and anxious all at the same time.


Even now, as I write this I am only a couple of hours away from Avery's kindergarten "Meet the teacher night." It is a night most mom's both eagerly anticipate and dread all at the same time. Traditionally the beginning of a long road of excellence, learning, and achievement. I've been feeling similarly to most mom's I suppose... I'm ready for a more "stable" schedule, but am also bittersweet about the daunting experience that lies ahead.

As far as I know, Avery has no idea about what is coming up next. I have "told" her about her new school, and even showed her pictures her precious new teacher sent over to her special ed preschool last May. But Avery's disability prevents her from being aware of almost everything outside of her immediate visual field. She cannot respond to my explanations, she cannot tell me what she knows or feels, and she doesn't respond to even simple labels or stories. It must be so hard to be feel so completely alone and on your own. We will always keep trying to reach her. But nonetheless, it is very hard to get through on any level.

I don't really have the "kindergarten blues." I have a little bit of the "this is not what I expected when my sweet girl was a baby and I imagined this day blues." However, she will be in a very special class called "life skills" with several kids all of whom have special needs. I think she will have 8 kids total and three teachers. She'll need all the help she can get. I am a little terrified of her being teased for making silly noises, and her getting lost as she can't "stay" with a group. But my sweet husband assures me that neither she nor we will ever know that she is being teased, and that her teachers will protect her from harm, loss, bullying etc. But I'm still the slightest bit terrified. Deep breaths.

In many ways I have to remember that my special child, though so very disabled, is perfect in many ways. She is our first "baby" and has taught us more than we could ever teach her. I've been "rocked" to the core with sadness.... but have come around, learned how to change my perspective, and move forward with positivity, unconditional love, and acceptance. Still... these next few days will be hard ones for me. Seeing kids who should have been Avery's peers start their elementary schools with backpacks on and smiles on their faces will be tough to swallow... but we will rock our way through this too, and come out stronger and more prepared for whatever lies ahead. So happy "new beginnings" everyone! May you count your blessings and savor precious moments in the last few days of summer.

Circumstance

I've had a few lovely opportunities in the last couple of weeks to get together with some pretty extraordinary mom's. Aside from my outstanding and amazing personal network of close friends who I love and adore, Autism has afforded me some new, equally lovely relationships with mom's in similar surroundings.

I'll never forget my first "meet and greet" with Autism momma's right after Avery was diagnosed and days before I delivered Kaylin. Someone, (and I can't even remember now who) patted me on the back, gave me a wink and a smile and said "welcome to the club that nobody wants to belong to." I remember smiling and laughing nervously, and thinking, no shit lady... man I wish I could drink right about now. Later on that evening, I also met and reconnected with some pretty fantastic women, who today I proudly consider my friends even if most of our relationship exists online, and we barely have time to get together amidst all of our kids activities, schools, therapies, and special events.

So what makes us so different you might wonder? Read back a few posts about planet Autism and you will be able to see. One example might be that even as I write this... I am sweating my ass off in a hyperbaric chamber hoping to heal my sweet Avery's brain inflammation a bit... how's that for a strange way to spend the afternoon? But if you are an autism mom... you get it.

However, as I travel the journey, like any other "club" the members have great differences of opinion. Sometimes those differences seperate an otherwise very important connection, and bring a lot of emotionally driven passion and discourse. I choose to steer clear of the disconnect, and try to be sensitive to the fact that we are probably all doing the very best we can with a sometimes very difficult and devastating diagnosis. I choose to learn from others experience, take what applies to us, and respect the lives that others lead. Even if I disagree with a specific treatment or whatever. These women, mothers, warriors, are all fighting a similar battle. How we cope, treat, blame, deal etc is personal and different for everybody. But is does us absolutely no good to turn against each other. Thankfully, I haven't experienced this personally... but I have seen it happen a few times and read about it all the time. I've even been criticized a few times right here on this blog for being sad, negative or whatever. Even though I think if those people actually read most of what I write they would see that I adore Avery... and am very proud of her, and grateful for the amazing opportunity I have at being her mom and learning first hand about the importance of unconditional love and tolerance.

I don't think it's a crime that I wanted more for my child. That I wanted her to able to have relationships, independence, and the simplicity of tasks that we all take for granted. The other day we were leaving OT and I was working on Avery getting her shoes from the entrance to the sensory gym.

Getting her shoes.

Just picking them up.

Forget putting them on.

I had a moment where in the pit of my stomach I realized that "my five year old can't follow a simple direction to pick up her shoes when they are right here in front of her face." Most of the time, I just do it for her. We all do. We get her dressed,change her diapers, feed her, walk her to the car, help her sit and get her buckled, turn on the tv for her, and so on and so on. She is dependent on us for everything. I'm not complaining. I enjoy caring for Avery most of the time.... I'm just pointing out that she needs me (or somebody) for just about everything. It's not what I wanted for her. And sometimes, that is pretty damn sad. So forgive me if every now and then I sigh, or tear up a bit. I promise that I am doing the best I can.

One thing is for sure. These kids... my kid.. can get better. But I have certainly learned not to let my well being or peace of mind depend on Avery's progress or lack thereof. We have spent the summer, and all of our money and spare time trying to ensure that she is getting all that she deserves. She has 9 hours a week of 1 on 1 ABA, 15 hours a week of group ABA, 5 hours a week of OT, two of Speech, and 2 of PT. She is one busy girl. Throw in some swimming lessons, hyperbaric dives and our week is over... only to start again next week. So what would she do if we hung around the house all day? She doesn't know how to play with toys yet (she only mouths them) so she would swing on her indoor swing and watch tv shows. She would play a few games on her ipad, but mostly have a show going on it too. She likes the intro songs and credits, so she would rewind it over and over again to see her favorite "parts." She would go in my pantry (if the gates were left open) and throw food on the floor because she has no idea how to open anything... and walk around in circles dropping her drink that we put in a sippy cup for her. So as you can see... we send her to so much therapy for a reason... she needs constant supervision and help. She is learning... but it may take a lifetime for her to learn what my middle child mastered at 18 months of age. Therapy is so important... and we are blessed and grateful that we are (at the moment) able to provide that for her. She deserves to learn how to do things... even if it does take 100 times longer to get there.

Somebody recently said to me...."but all kids, even those without special needs are hard." That lady was preaching to the choir. My three year old is as bull headed, manipulative, and smart assed as they come. But it's different. The issues I face with her are temporary, normal, and part of the parenting process. Though that kid can make me yell and scream and turn purple with frustration... I'm never sad about her. I am eternally grateful for her abilities, and though we have a few hard moments... there is absolutely no comparison. Autism and mastocytosis win the "hard" argument. Every time.

Am I mad about Avery having Autism? Not really. Mad is not the right word. I am sad sometimes, and overwhelmed often... but not mad. I love that kid with all that I am. I love all my kids that way. I just wanted more for her, and if all she can ever do is swing and watch tv, I want her to be the best swinging, tv watcher there is! However she ends up, I want to hold my head up high and be proud of the efforts we put forth. She deserves that.

So I've been all over the place in this post. I realize that the flow isn't really clear and the thoughts are scattered. But the point is, that sometimes it's crucial to connect with others who get you. Even if the "others" don't have children like yours, at least spend some time surrounded by people who don't judge you, and who can at least try to relate and be sympathetic to your circumstances. One of my biggest challenges in the last three years has been feeling incredibly alone. Seeing others and their seemingly perfect lives and feeling like an alien. It's sooooooo different. It just is. So thank you for your tolerance. Thank you for sticking in there with me. And thank you for loving Avery... just as she is. I can honestly say that I finally don't feel alone anymore. And I thank you for your friendship... even if you aren't in my shoes, the fact that you just read this lifts me up, and makes me feel loved and connected.

Born this way?

One of Kaylin's (my DJ in the making) favorite songs is Lady Ga Ga's "Born this way." Already a lyrics lover like her mom, Kaylin can belt out most of the words to her favorite tunes, and this song is no exception. It's pretty impressive to see a 3 year old sing along to the radio. I love the message this song sends out, and it makes me smile from ear to ear to hear her sing it... it's empowering and accepting, two pretty important traits to have in this little family of ours. But something about it also kinda irks me... and it's not the song, but something else entirely that I have always struggled with. Avery was NOT born with Autism. She was born perfect. She ended up with Autism, but she was not "born this way."

I guess it really doesn't matter, right? Well, it shouldn't matter. But it does to me. Something HAPPENED to my precious girl. And don't get me wrong, I don't love her any less or anything crazy like that, but for whatever reason it is important to me to share, to freaking shout out from the rooftop... that something TRIGGERED her to develop Autism. She may have a genetic pre-disposition, just like I probably do to develop diabetes, and other people do to develop certain kinds of cancer... but then something happened around a year and a half old that spiraled her development into one of the most severe cases of Autism I have ever seen. I have video of her waving, blowing kisses, talking, babbling, signing, referencing, looking,... all of which are nearly impossible for her to do now... AT FIVE.

I wish I knew for sure what it was for Avery. Many friends of mine SWEAR on one toxin, a certain vaccine or the combination of them, on a particular virus or bacterial infection... but for Avery is seems like the perfect storm of physical reactions and toxins took over her brain and body and wrecked her immune system and central nervous system. If I had to bet, I would say that the 18 rounds of antibiotics, severe allergic reactions to penicillin and vaccines, systemic inflammation from her autoimmune disorder and so on ALL contributed... but I am not sure exactly which is the MOST to blame. Whatever... my point is, she was ABSOLUTELY 100% NOT "born this way."

But, "get over it, right?" She is who she is now, and that girl is pretty AMAZING! I read something recently from a pretty seasoned Autism Mom who said one of her regrets was that she was not whole enough when her son was little to ENJOY who he was and just let it be... that she was too wrapped up in "fixing" the "problem" that she couldn't just accept his atypical development and move forward with various therapies and interventions to help him be all he could be. This really hit home for me. I need to shift my focus and let go of who Avery was before Autism took over. It happened. In many ways I may never totally be "okay" with it, but I can and do accept it.

So my hope for today as I continue the journey, is that I can learn to let it go. That I can smile and find strength in my happy, squealy, flappy, tip toeing girl, (and my other two equally important and fabulous little people) and that I can get through the hard times with as much grace as I can muster. We have a lifetime of challenges ahead, and I have no idea how hard it will get, but for now we are doing just fine. We are coping, and laughing, and hugging and sometimes crying our way through the darkness, and beginning to be authentic and confident enough to move forward with acceptance and tolerance for all that we don't know. Life is what we make of it... and I want to love and accept ALL of my children. Period.

So in the words of Lady Ga Ga,

"Whether life's disabilities
left you outcast, bullied or teased
Rejoice and love yourself today
cause baby you were born this way"
Don't hide yourself in regret
just love yourself and you're set
I'm on the right track, baby
I was born this way.

DON'T BE A DRAG, JUST BE A QUEEN!"

The World of Autism

Sometimes I feel like I've traveled to an alternate universe. I now reside in a world that is so distant and unfamiliar to most everyone I know. The world of Autism. It colors every perception, every single aspect of my life, every relationship and every experience is different. Not necessarily all bad.... just so very... different.

Unless you live it, or know me or someone like me well enough, and I mean REALLY well enough to grasp the heartache, the challenges, the blessings, the financial disaster, the strain on your friendships, family relations, marriage, etc... then I realize most of you have no idea what it's like to live in my world... our autism world. And nor do I understand what your world must be like.

Sometimes I walk around in judgement, and think about how most people really don't "get it." And by "it" I'm not even talking about Autism, I'm talking about "it." The "it" that is really all that matters... health, relationships, support, gratitude, authenticity, hope, love. Most people seem so wrapped up in crap that really doesn't matter at all... but then I have to step back, try hard to remember that everyone has a battle to fight, and STOP judging. After all, I don't want to be judged either.

Part of the purpose of this blog is to share our journey with disease and disability. To create an informative and heartfelt piece by which I can work through my own issues of grief, and to illuminate hope and light. In sharing the journey, I somehow feel a little less alone... like I am letting you in on what life is like here on planet Autism. And as much as I hoped that "autism" wouldn't define our family, I now fully accept and understand that it really kinda does... it is part of the fabric that weaves us together. It's not the only thing... but it's a biggie.

I think back to the beautiful essay about having a special needs child called "Welcome to Holland." If you haven't read it, google it, and do. It's a good analogy about what it's like. Our days are FULL, and I mean FULL of therapy to help Avery learn how to navigate outside of planet Autism, and how to bring her into our world in a small way. Every outing is a challenge, and things that so many take for granted become logistical nightmares for us. But all in all, when we are home, living in our own world where Autism is a part of the air we breathe, our "normal" exists, and we can relax and enjoy life in our own little world.

I had no IDEA how hard some things would be. But to be fair, I also had no IDEA how grateful I would learn to become about the littlest victories. The world of Autism can be lonely, and I am so sorry if I have grown apart from any of you reading this as a result of our journey. But we are navigating this uncharted (to us) territory as best we can, and trying very hard to keep from drowning in the difficulty. The best part is that we are choosing to be happy. To celebrate what we have and what we can do. Life is so much more grand if you can be content with the way things are. We can and do always hope... but we also are learning to live, love and laugh in this world of Autism. Come visit us from time to time.

The look of hope

It still amazes me how one single look can change my mood and bring excitement and joy to my heart. Everybody has noticed it. It's not just me. She is there, she really is. She is more "with us." She is LOOKING at us. And SMILING! A look. A simple little look. Those eyes sure can lift me up.

I'm not sure what it is. We are spending more time in the Hyperbaric chamber, and she is also doing The Listening Program with Bone Conduction at our beloved OT clinic... but who really knows why. I am just delighted. It may seem silly if you don't have a child like Avery, but for those of you who do, you know what I mean. It's the littlest things we hold on to, the smallest feat gives us hope and happiness beyond measure.

Do I think Avery will ever really overcome Autism? No. But it's gotta get better than this. Her progress over the past 3 years has been painstakingly slow... but she's still in there. And when she looks, and I mean REALLY LOOKS at me... I know we are never going to give up on her.

I can't imagine what it must be like. I know Avery has preferences, opinions, feelings and desires. But she can't talk. She can't tell us what hurts, what she wants, what she needs. The last few weeks, however, she has been able to communicate more than she has in a looooong time. She is leading us to things, signing a bit, and have I mentioned that she is LOOKING at us?! It's a reason to keep hoping. To keep working. To keep trying like hell to bring her back to us.

Three years ago, shortly after Avery was diagnosed, I began writing in this blog. Initially, I thought it would be excellent documentation of the amazing progress she would surely make. That we would be able to look back on previous posts and see how far she had come. Instead, it has been more about my personal journey with life, grief, perspective, and hope in the seemingly unfair circumstance of having a child with a severe disability and serious autoimmune disease. It has been quite cathartic to me, and hopefully eye opening to many of you. But all in all... even on the hard days, I know that Avery makes me better. She teaches me more than I will ever be able to teach her. Autism is the purest lesson in how to love. How to let go of expectations. How to not take anything for granted, and how to appreciate even the simplest of connections.... like a sweet glance.

We are so grateful for every look. Every smile. And every single attempt our precious girl makes to come back to us. Autism can take away so much. It makes simple outings nearly impossible, and can create heartache, frustration, and anger like you have never experienced before. But for us, it can also bring grace. And for that, we are truly blessed.

To Cope

Some day's it is hard to believe that I have been a mother for over 5 years now. In the last two months my sweet Avery turned 5, our precocious and gregarious red-headed firecracker turned 3, my beloved patient and amazing husband turned 40, and the baby is starting to move, babble back and forth, and really make amazing leaps towards becoming a little person with her own personality and preferences. I know it's cliche to say that time flies.... but in the world of motherhood, it really does. It scares the hell out of me sometimes. How we spend our time as mothers is never what we planned. And I know that all of the expectations and plans I had five years ago have somewhat flown out the window as I have become a mother who adores her kids, but often goes through the motions. Disability, disease, and the daily struggles have taken over and transformed me into a stronger, able, more flexible and less judgemental momma bear. And as much as they have hurt my heart and brought me to my knees in sadness, they have also inspired me to find vigor I never knew I had, and relativity to what really matters in life.

I had a lovely visit with one of my older brothers a few weeks ago who said something somewhat profound to me. He said that to live is really just coping with what life throws at us. Coping. It's a word I am all too familiar with these days. Sometimes I fear that I am "coping" a little too much... so much so that I forget to enjoy the tender, special moments. To throw out the comparisons, the can't do's, the tears and the tantrums, the fear and the disability, the sadness and the heartache, the things I know we miss out on, and the disadvantages we face.... and just be content and grateful. Maybe I waste way to much energy coping.

I know that I spend way to much time trying to deal with the baggage that comes with having a child who you adore, and who may or may not know I am even in the room. A child who spends hours crying in pain and the doctors nor I have no idea why. A child who smiles and laughs in her own world, and wanders aimlessly knocking stuff over and mouthing anything she can get her hands on from scissors to houseplants. Sometimes... no, in fact most of the time, her height is a big disadvantage. As I spend my days "coping" I am also dispensing dozens of medications and supplements, driving Avery to countless therapies and appointments, and utilizing all of my efforts to help her "get better." Trying to "heal her" has been how I cope. And some days I just want to let it all go and just let her watch 30 episodes of her beloved go diego go, and let her throw all of her food on the floor and use her diapers all day instead of taking 20 mostly unsuccessful trips to the potty where I do everything because, let's face it... we are no where near potty trained. And I have those days. And that is coping too... but probably not in a healthy way. So I will continue to find hope, another method of coping. To search for new ways to help her, and to teach her how to "cope" with her world. If that can be done.

I hope I don't get backlash for being "overly negative." I don't always just "go through the motions." Most every single day you will find me with a smile on my face, kissing on my kiddos, and making light of this crazy, chaotic life I lead. I am pretty confident that I maintain an attitude of gratitude most of the time, and that I am able to keep my perspective in check when I hear of someone with a terminal illness, or someone who has lost a loved one. I am blessed beyond measure, and I know that. We all have or WILL have something in our life that is hard, something that helps define who we really are, and something that gives us wisdom and strength we never knew we had. But day in and day out, I don't believe anyone has ANY idea how hard someone else's experience may be. I assure you, that long before I had kids but was working with children who had severe and special needs, I still had no idea how challenging parenting such a child could be. No idea. I do now. And I also know that my experience, though similar to some, is unique and different, and impossible to comprehend until you live it.

So as I move forward with today, it is my mission this month of May to find some healthy alternatives (other than my favorites which are caffeine, food, and wine) to cope. Dealing with my life is a blessing... not a chore. Opening my eyes to marvel in the miraculous development of my baby girl (instead of fearing regression), sharing a hand-holding moment with my innocent, lovely, disabled daughter... and appreciating that she loves me enough to do so (instead of being sad about all that she cannot do), and realizing the gift and wonderment of my sassy, adorable middle child's temperment and strength... (instead of the constant head butting)... those are on the agenda this week... along with a thousand other "must do's".

Life is not always fair. I would trade just about anything if I could assure a healthy, easier, functional life for Avery... but I can't, so my choice is to go with what we've been graced with, and make the absolute best of it. Some days will be really hard... and some will be amazing... but that's all just coping, and in doing so, I am hopeful that I am able to share and spread just a little bit of love and acceptance.

Attitude is Everything.

We have some pretty big events coming up in our house this week!

The first is a very special birthday celebration. Five years ago today I was preparing for the biggest day of my life so far....Avery's birthday. Tomorrow, on March 28th, Avery will turn FIVE years old! When I think back on that day, it amazes me how the dreams I had for her and the way I "thought" our lives would change are all so different now. Don't get me wrong, I still have dreams, and I still maintain that the change that has transformed within us as a result of having our sweet Avery in our hearts is all good. But the dreams are different nonetheless, once again proving that trying to project future events is usually a waste of time! But now, five years after our sweet girl arrived, it blows me away how she is able to bring out the rawest form of love in people. Love that expects very little in return, and love that isn't earned or conditional. She has plenty of things she "can't" do yet, such as talk and run, but she inspires me and those around her every day to work hard, to love better, and to adopt a positive, go with the flow attitude. Her short five years have been a roller coaster of miraculous and marvelous highs and lows, and all in all, we are exceptionally blessed to have her as our sweet daughter. And we will hope, dream, and be here for her in every way that we can for the rest of our lives.

Also coming up this week is "moving day" for us! We are busy packing up our house and slowly schlepping our enormous amount of "stuff" to our new house. We leave with lots of precious memories, but are excited to create many more in our new home. I can tell you that trying to pack and move with three little girls all (developmentally) under the age of 3 is VERY challenging. Thankfully, we have lots of awesome helpers, and we are extraordinarily grateful for their time and effort!

Finally, on April 2nd we will once again acknowledge the National Autism Awareness day, "Light it up Blue." Hundreds of buildings around the nation will change their "lights" to blue in honor of autism awareness, and thousands of people will wear their blue in support of those with Autism and the challenges they face. We will wear our blue with pride, as we are all to aware of how Autism can change the course of a life, and how challenging everyday activities and interactions can become. I wish that even an hour of one day could go by that the word "Autism" didn't cross my mind. When it is as severe as what we have here, it can really become all consuming. Autism may have taken my daughter's voice, and her ability to understand human interactions, but it hasn't taken away her soul, her smile, her laughter, or her brilliant presence. The absolute greatest lesson I have learned from having a daughter with severe Autism is that Attitude is Everything. How I decide to see or perceive something is really up to me. I can choose to be grateful, and see the good in a situation, or I could choose to be angry and sad, and play the victim. Choosing to be grateful doesn't mean I'm not sad from time to time, and by no means have I mastered a positive attitude. But I will keep trying. Happiness shouldn't be so hard, and it really isn't if you simply choose it.

I'll end with a quote from Denis Waitley:
"Happiness cannot be traveled to, owned, earned, worn, or consumed. Happiness is the spiritual experience of living every minute with love, grace, and gratitude."

Happy Birthday tomorrow to my sweet Avery Grace. You light up my world and bring so much love, happiness, and hope in every step you take. I love you to the moon and back again. Forever.

Please remember to wear your blue on April 2nd. Do it for Autism Awareness. Do it for Avery and the thousands of kids like her who deserve to be heard, even when they haven't found their voices yet.

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.