Ambushed

If every there was a blog-worthy event in our tumultuous journey of having a daughter with significant special needs, it is this one. Only it wasn't ONE event. It was NINETEEN of them, all wrapped up with hearts and bows to share a simple message of love and support. For 19 glorious days, our friends came together (behind our backs and without us knowing) and delivered daily anonymous gifts of love. We got sweets, treats, gift cards, LOTS of wine, beer, snacks, decor, candles, toys, plants and most importantly... precious messages of love, kindness, unity, and friendship.

Within any two or three week period in our family life, there is always plenty of stress, drama, laughter, sadness, good news, bad news, and usually, several visits to doctors, specialists, therapists and so on. Those 19 days were no exception, and the daily reminder that we are not alone, and that we are loved lifted us up, and brought so much joy and fun to each and every day. We will hold the experience in our hearts forever, and we can never thank you all enough for showering us with such attention and heartfelt tenderness.

I think it is often the case that friends and loved ones have no idea what to do for a friend in a situation such as ours. If your neighbor has cancer, you help them through their treatment, cook them dinner, etc. When your friend or loved one has a child with a lifelong disability, then what?

When Avery was a babbling, social, connected infant, we learned she had Mastocytosis. So we grieved the loss of our healthy baby as we knew her disease had no cure, and was starting to infiltrate many of her organs. When she regressed and spiraled from a "normal" baby to one with both Masto AND Autism (a result of neuro inflammation), we grieved again as we had lost the dreams we had for her and our family. It was the absolute darkest time of my life as I realized the limitations Autism imparts. Then lately, as our sweet daughter gets older, we find ourselves grieving yet again. To me,initially, Autism meant that, though she would be limited, she would still surely make progress, learn to talk, learn to go potty, turn on the faucet to wash her hands, and so on. So here we are, four years after diagnosis, and Avery's skills are still pretty much the same. She can't run, jump, or follow instructions. She is still non-verbal- and now doesn't even babble at all- she is still in diapers, we still have to feed her, wake up every night with her, dress her, bathe her and meet her every single need 24/7. Despite tens of thousands of dollars spent on therapy, lots of time, prayers, hope... here we are. In the same place. Stuck. Scared. Sad. But now we know for sure, that we are NOT alone.

Three weeks ago I was at an all time high on the stress meter. I am working again, which I love, but with that, and the post MS degree classes I am taking for yet another certification... plus my three monkeys, plus ALL of Avery's therapy, plus some new health issues for me and a close family member... and I was IN OVERLOAD. Someone knew that. Someone organized an amazing output of love for us. And to that someone I say again... thank you. Thanks for the reminder that life is really all about our relationships, and that love really can conquer lots of broken dreams, anxious feelings and agonizing fears.

My heart is full and my life is enriched beyond measure. Day by day, I am learning to change my perspective and let go of the circumstances I cannot change. Minute by minute I am trying to ease the sadness that still grips my soul. I may never ever "get over" Avery having to struggle with every simple thing, but I will love her and care for her day in and day out... and pay forward all the encouragement you have bestowed to me. What a gift of grace.

No Words

Sometimes I get a kick in the stomach just when I need it. No, not the literal kick I get daily when drying off my flappy, stimmy, silly Avery after her shower that overstimulates her central nervous system and sends it into a frenzy.... I mean a metaphorical kick... one that reminds me to snap back to reality when I've taken a "sad" or "envy" moment. A kick that signals me to get a grip, march onward, and put my big girl panties on. Today I felt one of those kicks.

Some of you have heard this story before, but its worth repeating. Back in the "dark days" (when Avery started regressing and her autoimmune disorder was spiking) I was panicked that she would never talk. (4 years later I'm a little calmer about that likely outcome) I was freaking out about the dreaded "A" word, and couldn't begin to understand why I was "losing" my once connected, babbling baby to a disorder that I was all too familiar with. I remember clearly when she stopped responding to her name. I found myself screaming her name right beside her, tears running down my face as she stared off into space. I'm pretty sure I could have been on fire and she wouldn't have noticed me. Anyway, I digress. But you get the point. It was a time I was full of anxiety, fear, sadness and despair. Then I got a phone call from one of her doctors that brought me to my knees. A metaphorical "kick" to the stomach. "This could be more serious than we thought. We are pretty certain she has Systemic Mastocytosis, and some of her bloodwork indicates that she could have Mast Cell Leukemia." Are. You. Fucking. Kidding. Me? Was all I could think. And so began my affair with Google.

I remember that night so clearly. I was rocking my always sleepless baby in my arms, trying to pinpoint where this all went wrong. Was is something I did when I was pregnant? Where genetics somehow to blame? (even though no one has Autism or mastocytosis) Did vaccinations assualt her already weak immune system and send her brain and body into an inflammatory mess? Did the 18 rounds of antibiotics for her constant strep and ear infections somehow destroy her immune system? And most importantly... What could I have done differently? And, What can be done NOW?

It was several days before we had results back from the oncologist that told us that she DID NOT have Leukemia at that time. I remember being so grateful. And saying OUT LOUD that I didn't care if she never spoke a word, or looked at me ever again... that I just loved her, and wanted her here, and that her life would have meaning. No matter what was ahead of us.

It was a BIG kick in the stomach. And in some ways I am glad I had it. I needed to know that I was going to be ok with Autism. And most of the time I am. But lately, I've been a little bit bummed. Bummed at lack of progress. Bummed that my kid seems to have the MOST severe kind of Autism. Bummed that she still can't use a toilet or even pull down her own pants. Still can't talk at all. Not even a word. Bummed at the tens of thousands of dollars spent on therapy... though I would give her my very last penny as long as there is an inkling of hope that it will benefit her. Bummed at the flare up in Masto, bummed at the side effects of her meds. Just bummed.

But today I came across two circumstances that kicked me back to gratitude. First, I read a blog of a woman who is days away from losing her beloved baby boy (age 2) to a horrible disease. Second, I picked up and read the obituary we saved of a dear friend of ours who passed away from cancer in November who left behind her loving husband, parents and two precious daughters, ages 1 and 3. Susie often commented on my blog posts and was a fighter until her last day.

It seems totally screwed up that these tragic and horrible circumstances make me feel so lucky. It also makes me feel like a big jackass. Each day with my girls, no matter how chaotic, is a GIFT. I control very little in my life, and certainly feel entitled to have a few bitchy days and feel a bit short changed from time to time.... but at least I get to BE HERE. And Avery, despite her MANY challenges, is also HERE and walking and breathing. I would give my life in a moment if it meant that Avery could be healed... but it doesn't work that way. So for today, I march on. I choose to lift off the "bummed out" veil and get a grip.

Autism, Apraxia, Mastocytosis... they all LITERALLY kick me down from time to time. I'm not saying that it's ever going to be easy. But being Avery's mom, whether I like it or not, is defining me. For a little girl with no words... she sure does inspire a lot of them from me. I can't imagine life without her. Words or not, she is making her mark, and if I have anything to do with it... she will be heard.

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.