Avery Grace

Avery Grace

Friday, December 30, 2011


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.

Thursday, December 22, 2011

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.

Monday, December 5, 2011

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.