Purpose

Inhale.  Exhale.  Inhale.  Exhale.  Repeat.

For the sixth time in the last five minutes I have had to remove our dog's nylon bone from Avery's mouth.  I just kicked the dog (and her bones) out of my room.   Miraculously, for about the fifth time in her life, Avery pooped on the potty today.  I have changed her clothes twice due to crappy big kid diapers, and I just finished feeding her dinner and dispensing medications no seven year old should have to take. 

Avery is happy and delightful today, despite a fever of unknown origin that afforded us a rare afternoon to spend together.  It was awesome to share a few moments with my big girl.  We no longer have a full time (or even part time for that matter) caregiver for the girls, so we are adjusting to a new way of life, which often includes drop-in daycare for the little girls so I can work while Avery is busy in therapy. 

Oddly, I work with children with special needs.  Mostly Autism.  So almost every moment of my every waking breath is spent with someone who needs extra care.  Extra support.  And Extra time to learn even the most basic human development. 

The kids I work with are as varied as any two kids.  Some are non-verbal, like Avery, and some just struggle with anxiety or social thinking.  On Sunday, I completed my graduate course at UNT.  I received my masters degree 11 years ago, but am now back in school for a new certification to allow me to bill insurance while treating kids in whatever way they need... using floortime methods, RDI methods (both I have been previously certified in) or ABA methods... which certainly have their place when teaching life skills to a kiddo like mine.  If you know what the hell I am talking about, you probably have or work with children with Autism.  If you don't know what I am talking about, then let me just say that there are several teaching methods, each with strengths and weaknesses, that address the many needs of Autism and related disorders.  To be an effective therapist, I wanted to understand and study three of the most popular. 

For thirteen years I have been learning about, and working hands on with children who have Autism Spectrum Disorders.  Thirteen years.  My daughter, who at 19 months was diagnosed with severe Autism (over five years ago) has been my greatest teacher.  Mostly because her progress, or lack thereof, and her M A N Y medical issues and diagnoses' that have left me flabbergasted, despondent, heartbroken, courageous, enlightened, and stronger than I ever imagined I could be.  In addition to  mastocytosis, autism, and apraxia, her newest diagnoses include epilepsy and atypical Rett Syndrome.  The combination is mind boggling.  And horrifying. 

I'm not seeking pity, or anything really, I just want my loved ones to know why there are times I may be kinda bitchy, over emotional, under emotional, why I hide in the pantry and eat...or whatever.  There are times I want to move to a remote island with my husband and kids and live a "new normal" since it seems our life is so far from typical.  Lately, I have been a little more anxious than I should be, and I am working hard to adjust my way of thinking to be more present, more grateful and more authentic. 

Trying to find a "purpose" when you are dealt a hand like mine is pretty easy.  I am lucky my purpose is such a sweet, easy going, lovely, little disabled seven year old. Sure, our life is a different kind of "hard,"  but isn't everyone's?  Every single person I know has a story.  Just about EVERYONE has overcome something. The thing that makes our story different, or a "different kind of hard" is it's persistence.  Our "hard" will last a lifetime.  Hopefully.  I hope and pray that Avery outlives me, and if she does, I am working my ass off to make sure I am equipped to handle the challenges that are sure to come about.  It is ALWAYS something.  Just this past weekend our handyman friend had to come over to put a plexiglass casing around our shower knob so that Avery will stop yanking on it and scalding herself.  "Averyproofing" alone has been such a challenge.  Imagine a 4 and a half foot tall 9 month old.  

I feel lucky to have discovered such a relevant passion, long before I even had a personal reason.  Call it fate, or preparation... I was on a path to become Avery's mom.  I struggle with faith, but can clearly see that all of my life prepared me to be the parent Avery needs me to be.  So today, unlike some of my harder days, I can choose to be grateful.  To be aware and active in my "purpose,"  and to see my life and my children as true blessings.  Just as they are.  Am I likely to return to sadness tomorrow.... probably.... but for this moment, I am absolutely full of grace, joy and hope. 

Matters of the heart

For years I have been saying it.  Feeling it.  Aching at the knowledge.  It is different for my husband. Admittedly, he knows very little about the world of Autism and related disabilities.  He can take a diagnosis, grieve, and move forward.  But for the life of me, I just KNEW that Avery's list of diagnoses' just didn't explain it all.  I hoped I was wrong, and that time would prove that I was, but as time marches on, I am even more certain.  Certain that what Avery has is more than severe Autism.  Her motor skills wouldn't continue to spiral downward, the H O U R S a day and tens of thousands of dollars spent on a variety of therapies in addition to medications and biomedical interventions would have made a remarkable difference if this was what we thought it was.  But I am pretty certain now that it isn't.  Though I am not exactly certain WHAT Avery has, one strong possibility is Rett Syndrome.  Yep, I said it.  Rett Syndrome.  It actually is a part of the autism spectrum.  It is on the severe end of the spectrum, and includes regression in all of the area's Avery has experienced.  Motor skills, hand use, language, social/emotional, cognitive.  All of which makes my sweet girl, at almost seven years old, less capable in every developmental way than she was at 12 months old.  That's right, twelve month old babies have several skills that my precious girl had.... and one by one, has lost. 

So moving forward, what to do now?  What is her prognosis?  Well, before I jump ahead of myself, we have to have some sort of diagnosis I suppose.  We are taking Avery to one of the best Rett centers in the Country for evaluation and medical care.  She and I will trek to Houston in a few weeks for our first of many appointments at The Blue Bird Circle Rett Center where Avery will be seen by a team of doctors who specialize in treating girls with similar symptoms.  If you want to know more about Rett Syndrome you can read about it at http://www.webmd.com/brain/autism/rett-syndrome


Emotionally speaking, I am not sure what difference a diagnosis makes.  Over and over again we have had to cope and come to grips with the reality of Avery's disabilities.  Our definition of hope has evolved over time, and we are gradually easing in to the idea that Avery may never speak, and will  always need 24/7 care to meet her needs and keep her safe. Thankfully, we have an abundance of gratitude for our many blessings, and can always snap out of our sadness to remember how beautiful and unique each of our children are, disability or not.  That's not to say that several times a day I don't hold my breath for a moment and worry about what the future holds, but I am constantly reminded of what really matters.  Love matters.  Compassion matters.  Empathy matters.  Forgiveness matters.  Grace matters.  Joy matters.  And even Hope matters.

 I'm far from perfect.  I have lots of work to do as a wife, mother, friend, and citizen.  But I'm not giving up.  Not on me, and never on my lovely daughters.  Though in many ways I am a realist, that doesn't mean I won't stop searching for ways to make my daughters life have meaning.  Words or not, Avery's voice will be heard, and I just know that deep inside, one day, she will have an exquisite story to share. 

Uncertain Happiness

I was talking with some of my colleagues in the world of Autism treatment, and heard some disheartening facts about facilities meant for housing and caring for adults with disabilities. It's not as if I didn't know some of the despicable details, but in an effort to maintain positivity, and seek peace and beatitude, I have been trying to convince myself to be more present, as this seems to be a lifetime away.

I had a lovely conversation with my beloved Dad about this not too long ago, where he explained, and agreed, that the happiest people are not the people who live in the past saying "if only" and "back in the good ole days,"  nor are they those who live for the future saying "when this happens then..." or "I'll be happy IF..."  but rather, as many of us know, the happiest people are those who can see the beauty in the moment, find gratitude in each day, and be present and authentic. 

For the most part I would say this perspective is working for me, and I am, most of the time, pretty (maybe fairly) content.  Most days, I feel like I can handle our circumstances, some days I feel like I am drowning and others like I am kicking ass, but for the most part, I am doing pretty okay!  Better than okay, even.  But when knowledge about the horrors associated with what is potentially your child's future come to rise, it is as if I have been kicked in the stomach and slapped in the face.  I feel helpless and out of breath.  What do you mean a group home won't take individuals with sleeping disturbances who can't wipe their own butt?  The "nice" facilities discriminate the disabled?  Shit! 

I have ALWAYS said, and I still maintain that my disabled child can live with me for as long as I am breathing.  She is a part of me and will be in my care for as long as physically possible.  But, as every parent with a severely disabled child fears, what happens when I am not here. What happens if she outlives me?  Where will she go?  Who will care for her and love her and provide an enriched environment for her?  Deep breaths.  Stay calm.  Think.

Even as I write this, my beloved oldest daughter is climbing on me and making sounds many of you might balk at.  She has (in the last five minutes) knocked over two lamps, is chewing relentlessly on her chewy tube necklace AND her shirt, and has soiled her diaper.  She is almost 7.  It is not "behavior."  She is, in many ways, like a giant baby.  Developmentally, below that of a young toddler.  We feed her, change her clothes, and meet her every single need.  Watching Avery is like bodyguarding.  It is a 24/7 full time job that is becoming physically taxing.  Thankfully, her temperment is delightful though distant, and her general disposition is easy going and pretty go with the flow. 

I don't mean to complain.  I adore her.  I am, day by day, coming to grips with what she can and can't do.  I BELIEVE that she is so much more than her disabilities and I KNOW that she brings an abundance of grace to all who know her, but if her past is any indication of her future, then what and how should I plan? 

In the same conversation I referred to earlier, my dad explained that plans rarely ever pan out the way you intend them to anyway.  The only thing that is predictable is unpredictability.  Absolutely true.  But that being said, I can make some arrangements that may ease my heart and mind a little bit...

Avery is blessed with two sisters.  Although I do not expect them to devote their lives to caring for her, I do expect them to love her and learn how to look out for her.  As older children, and then as adults.  Hopefully THAT plan pans out, but who knows! Thankfully, they are their own strong little people with their own big ideas!   Avery also has a mom (me) who by some miracle was professionally educated and trained to work with individuals with disabilities.  Hopefully I can devote my career not only to helping others, but to create a place where Avery and people like her can live in a domestic, loving, enriched and purposeful environment.  Avery also had a dad, who is the hardest working person I know and who loves her without conditions.  Period.  Though he may not have chosen a life with so much heartbreak, he is the PERFECT dad for Avery, and he makes me a better mom for her as well.  And finally, Avery has several other loved ones who we may never have met if it were not for her challenges, but who have enriched our lives tremendously.  It is nice to have a select few who really know and see what our day to day looks like, and who can provide some much needed respite and support. 

So, now I can breathe.  I may not know what our future holds, but I can try to find a healthy balance of living for today and making responsible plans for tomorrow.  I know almost nothing for certain, but I know that I never could have imagined that I could find such glorious love, joy, grace, and hope in the hand we were dealt.  So no matter what comes around the corner, I am trying to open my mind to the realization that we can handle it.  Even when and if we can't .  In so many countless ways we are blessed beyond measure.  And if I keep my eye on that, I know I can live in uncertain happiness. 

2012 Holiday Letter

 It’s the season of sparkle and shine.  A time to be jolly and bright.  As the days get shorter and the neighborhood homes are illuminated with holiday color, I watch the gleam in my young daughters’ eyes shine with expectation, delight, and wonder.  It is a time to reflect on our many blessings, and to share good tidings with family and friends.  It’s easy to get lost in the beauty of the season, but also just as easy for families like ours to take pause and wish for just enough hope to get through without incident, as we sometimes struggle to find strength and gratitude amidst the chaos.  But if we have learned anything at all in our journey, it is that there are always reasons to be thankful, and that most of our anguish has some sort of silver lining, though at times it may be hard to find.  Some of our shining moments from 2012 include:

1. The “Love Ambush.”  Every day for almost a month, many of our friends organized anonymous gifts to be delivered to our door with messages of love, hope and support.  It was an experience like none other, and we were humbled and full of gratitude for their show of overwhelming compassion and care.  I think that more often than not, people don’t know what to do when they have friends like us.  When someone has cancer or surgery you may make them dinner or help with their kids.  When someone has a child with constant medical issues and a severe intellectual disability that baffles doctors and therapists for years.... then what?  Well, we must have the best friends in the world because they figured out a way to let us know they get it.  That they love us, and love our children, despite disability.  It was an amazing experience that we will never forget. Grateful just doesn’t seem to give it enough justice.

2. The water.  Summer brings with it lots of heat and uncertainty as our schedules change and we plan around two working parents and three busy little girls.  We spent lots of time together in our pool, and Kaylin (4) is our big, independent swimmer!  We traveled to Atlanta over July 4th and enjoyed a week of awesome family time and most every day at the country club pool in my parent’s neighborhood.  The water is something all three girls enjoy tremendously, and Bryan and I love to see our babies happy and free.

3. Another 2 year old who talks!  Given Avery’s story, it is with a BIG sigh of relief that we reached another milestone with our third baby girl.  She turned two, and is talking with no developmental regressions!  Wooo hooo!  We did discover that she has terrible vision, but thankfully, her glasses are precious, and she LOVES wearing them.  Presley is a delightful toddler who loves her days at home and on the go with our A-W-E-S-O-M-E nanny/respite care provider who we are so lucky to have known the last 4+ years.  April, our nanny, is a BIG blessing to the Beeson 5.

4. Pre-K and First Grade. Kaylin attends Pre-K at an Episcopal School near our home.  She “played” soccer this fall, though she had more fun twirling, skipping and singing on the field.  She loves swimming and karate, and is an extraordinary sister to Avery and Presley.  She has enough energy to light up a city, and brings so much joy and laughter (and plenty of trouble) in to our home and hearts.  Avery is six years old and is in a special education class here in Frisco and also attends 30+ hours of therapy a week, including weekends, to help her in every way.  She is THE hardest working person I know. Avery is still non-verbal, and rarely makes any sounds, but we have seen some improvements in her skills, though the progress is painfully slow and very hard to measure.  Unfortunately, she incurred a few  significant injuries this year, as she continues to struggle with her motor skills, and was recently diagnosed with epilepsy. Despite her obvious needs and difficulties, she embodies love and grace, and challenges us to be stronger, and better in every way.   Avery may be harder to reach, but her impact is immeasurable as she defines unconditional love and brings out the most amazing qualities in the people she knows and  adores.

5. Back to school.  I guess I decided our life wasn’t stressful enough, so I went back to school this year to become board certified in behavior analysis.  I was accepted into a program at UNT for students who already have a masters degree, and am taking online graduate classes while working as a therapist 4-5 days a week to acquire the mandatory 1500 supervision hours.  I enjoy the job tremendously, and mostly see it as a welcome break from our own personal and constant crisis.  Bryan has been an amazing partner and full time daddy on the weekends as I study and complete projects. 

6. Speaking of Bryan...Our husband/daddy extraodinaire is really excelling in his career in the energy industry, and (despite a very long commute) seems to really like his job as a business development manager at Hudson Energy.  Thankfully, we were able to get away this year (just the 2 of us) as a very dear friend tied the knot in Cape Cod.  It was an awesome trip, and a beautiful event which provided us marvelous opportunity to spend some restful, kid-free time together. 

7.  The broken elbow.  While poor Avery sustained a nasty knee injury, a new diagnosis of epilepsy and a broken shoulder this year, I fell while holding Presley and broke my dominant elbow.  OUCH!  The only silver lining in that mess is that the fabulous and amazing Grammy has flown in S E V E R A L times to help with the girls, which they love, and tend to me, which I love too.  She is the expert in caring, hard work, love and attention.  Though I could have done without the hassle and pain, it has been a welcome addition to have my sweet mom here so often to spend time with and learn from.  I wish you could see her connect with my girls... even Avery.  Avery loves to be acknowledged, played with, and talked to. And while many people don’t realize that, my mom always makes a BIG effort to find a way to reach our sweet girl. 

8.  Another walk of hope.  Every year, we encourage our friends and family to come walk with us in the Dallas area Autism Speaks fundraiser.  Our team, Avery’s ARMY, lifts us up and reminds us to keep fighting.  I want my younger girls to know that we walk for Avery year after year to raise awareness and hope.  It is important for them to see the “big picture” and realize that Avery is an individual first and foremost, who also happens to have a debilitating disorder.  A disorder that has not only taken so much from Avery, but one that changes our every moment of every day, and makes our family unique and our daily lives incredibly challenging.   We are so grateful for the dedication of our loved ones who take a few hours out of their busy lives to participate. Though there are other Autism charities we prefer to financially support, Autism Speaks does a nice job making our girl feel special by hosting a walk that allows us to gather together as an army of supporters.

With all of that said, the aspect of our lives that outshines the rest is our connection to others and our constant realization that we are surrounded by the amazing allegiance and amity of all of you.  Our journey has afforded us the opportunity to learn how to live in the present, focus on the positives, learn how to truly love without conditions, and perhaps most importantly, develop the most amazing friendships that have expanded and enhanced our family tremendously.  We hope you and yours have a glorious holiday season and a 2013 full of silver linings and precious memories.

Love and Peace,

Bryan, Jenny, Avery Grace, Kaylin Joy & Presley Hope Beeson

Thanksgiving Thoughts

If you know me, then you know that long before there was an Avery, (or Kaylin or Presley) I was a young professional eager and excited to change the course of childrens' lives as I dove into the world of Autism intervention.  In graduate school, we had an abundance of hands on training, and I still remember most of the kiddo's names who were my very first "clients."  I ended up working at the place where I had my final internship, and became skilled at assessment, program planning, and discussing the "hard" topics with parents whose lives were being turned upside down.  It was a birth to three program, so, more often than not, I was the the first step in a loooooooong line of therapists and interventions for those terrified and overwhelmed parents of autism spectrum kiddos.  I like to think I was empathetic, professional, gracious, and so on, but it wasn't too long into my own personal autism journey that I realized what a jackass I might have sounded like (at times) to some parents, who I now know were in utter and complete hell.

While I was pregnant with Avery, oddly enough, I was being certified in a "new" type of therapy called RDI, which stands for Relationship Development Intervention.  It had been touted as the "missing" link in Autism therapies, and I was excited to address what I (still) believe are the core deficits of all Autism Spectrum Disorders.  I had already been trained in Floortime (another popular intervention) and was, at the time, pretty against Applied Behavior Analysis, (what I am currently becoming board certified in.)  There are many schools of thought as to the "best" way to apply intervention to Autism, and what is right for some kids may not be right for others so I decided that  to be the best, I needed to be versed in all three.

So it is safe to say that I have met a few kids with Autism.  Over one hundred.  And I have never met two kids who are the same.  Just like neurotypical kids, children with Autism are as varied as any snowflake.  And mine is no different. Or is she?

I have really struggled to find a diagnosis or definition that is truly accurate when describing what is going on with our sweet girl.  Her early development was flawless.  I was checking off milestones one by one during that first, blissful year.  Teachers and therapists often disregard me when I say that, but as a professional in child development, let me assure you there were NO early indications of Autism or any other delay or disability.  Her motor, social, language, and adaptive skills were right on track, until the age of 14 months when she had a major immune response (due to her diagnosis of the autoimmune disease Mastocytosis), to penicillin of all things.  She had suffered 8 ear infections and 6 bouts of strep throat by the time she was one and a half.  So it was around this time that Avery's body, and all of her development, shut down and started to move backwards.  It was as if she had suffered a traumatic brain injury that kept, and still is, occurring.

So once I wrapped my brain around an autism diagnosis, I felt as prepared as I could possibly be.  But as the months have turned to years, and the one step forward TWO steps back pattern has continued, I am left baffled, heartbroken, angry and flat out tired.  After all, the many kids I know and work with who share an autism diagnosis make PROGRESS.  Not necessarily in any particular way, but almost always, therapy is very beneficial to the skills they acquire.  Avery is in many many many hours of therapy each week, and I shutter to think of where she would be without it, but her skills are still very infantile.  She has, at age 6, yet to regain most of the milestones she had reached at the age of one.  As many doctors have described her, she is an "interesting case."  Only to me, she is not a case at all.  She is my beloved first born daughter.  Who I would suffer and die for.  Who I nursed for over a year, who used to call me mama, who used to babble back and forth with me, laugh at my silly faces and who defined me as a mother. 


In the early days, post diagnosis, I gravitated towards other mom's like me.  Mom's who were driven to find answers, eager to seek help, and motivated to heal their children.  I backed away from some friendships, have had to endure countless insensitive comments and actions, and turned to the glorious internet for answers.  Now, I still find comfort in other "autism mom" company, but am often times left to observe the blessed progress their children make, while my own precious daughter stays relatively the same. Alone again. 

 But perspective is a wonderful thing.  As different as my child is, one of the greatest gifts she has ever given me is gratitude. As painful as it can be to remember Avery as she once was, I am still grateful to have had those precious moments.

 I have sought out other blogs about non-verbal children who are "trapped" inside like Avery, and have found within their words, an abundance of gifts and gratitude.  I am learning not to take so many moments for granted.  I am learning how to truly love without conditions.  I am learning the importance of patience, perspective, family, and letting go of selfish pride and materialistic attitudes.  I am learning to be tolerant of people I would have long ago moved away from.  I am learning how to live.  All because of what I thought was suffering and unfairness, I am now learning to see as glorious opportunities.  Opportunities to be more complete, more alive,  and better than I even could have been without sweet Avery and her disabilities.

Some days it is very easy for me to be angry, and more often sad.  But today, on this Thanksgiving, my eyes are open to the many gifts bestowed to me.  I would give just about anything for my daughter to have a life where she could be independent, healthy and heard.  I really would.  But moment by moment I am trying to be grateful for all that she is, and all that she can do.  And grateful for the countless gifts of grace that she is able to unknowingly give to so many who know and love her. 

Most of all, I am thankful today and every day for my three greatest blessings, Avery, Kaylin and Presley.  Avery has paved the way for me to learn not to take them or any of their abilities for granted.  And for that I am forever grateful.

Holidays can be hard if you have a family like mine.  Today I choose to live in the moment, relax a little, breathe deep, and remember my countless reasons to be thankful.

Eyes.

I hesitate to even say it.  Writing about it seems a little less risky.  Maybe I could whisper it... maybe you could just come by and see it.  Progress.  Whoa.... did I really just put that on the page?  Yep.  Progress.

Avery is six and a half years old.  So it's been five years.  Five years since the developmental clock stopped for her.  She was about 18 months old when she started moving backwards.  Losing words, signs, gestures, muscle tone, eye contact, and understanding.  Five years.  It seems like yesterday.  But I digress.

In my last blog entry I shared with you of Avery's most current diagnosis.  Epilepsy. A rattled brain to accompany our list of growing diagnoses.  Not that I was surprised.  I was, as I mentioned, even a bit relieved.  To finally have something that is treatable.

For three short weeks she has been taking a medication to try to control the almost constant seizure activity that was wrecking havoc on her temporal lobe.  The medication has a long list of side effects, as do the dozens of nutritional supplements and pharmaceutical drugs that Avery already gets in a hefty daily dose.  For the first week, she was a bit "zombie" like (for lack of a better description.)  Her teachers and therapists watched as she muddled through the day, drooling and half asleep.  The neurologist told us, as they often do, to wait.  Wait.  Give her some time to adjust before we jump to another new medication.  I almost didn't listen.  She was even further "away" from us than usual, and I couldn't imagine being that physically exhausted all of the time.  However, I held my breath and relented to give her another week.  I'm glad I did.

Fast forward a few weeks and everyone who knows Avery has noticed a change.  And this time, it is a positive one.  Simple things like, when I say, "put your cup on the table" (instead of the usual throwing it on the floor) and she DOES it.  Better eye contact, better simple imitation, more laughter, more vocalizations, and (dare I say it) better SLEEP.

If someone walked in to my life and saw how we manage our house and schedule, I am quite certain they would run away screaming.  Autism-proofing our home and lifestyle is an adjustment to say the least.  Just yesterday, Avery was able to reach a shelf we had screwed into the wall in her playroom that held the DVR and DVD players.  The TV is already mounted to the wall, cords wired behind the drywall.  She pulled the whole shelf down and was biting/mouthing the wires that came down with the equipment.  Thankfully, she was fine.  Thankfully, we have a handyman friend who came right over to save the day.  Until she gets a little taller that is.  We have five professionally installed baby gates in our house.  We have video cameras to watch Avery.  We just replaced blinds with shutters to keep her from strangling herself with the strings as she couldn't resist constantly meddling with them.  I've glued/taped down picture frames, decorations, and rearranged locks and added toplocks to our doors.  We even had a electric gate installed across our driveway to prevent her from somehow escaping out in to the alley way.  We are constantly on our toes.  Constantly having to re-think how to manage.  It can be exhausting.  All the while watching our precious daughter grow taller and taller, but stay on a developmental level of an infant.  We have fears and worries that no parent should have to encounter.  That most everyone is completely oblivious too.  Autism, oral apraxia, motor apraxia, mastocytosis and epliepsy have left our sweet, happy, adorable girl, still without words, without simple understanding, and without so many abilities that we all take for granted.

So it is with extreme caution that I use the word progress.   But let me share one more example.  Today I was taking Avery to sit on the potty, which we do every hour or so even though she is not potty trained.  She's about 50/50 as to whether she will actually go or not, but we are trying to give her the opportunity.  Anyway, she was looking right at me, smiling and laughing.  I was waiting her out, persistently sitting her back down because I knew she had to go.  Since we were sitting there, I decided to play a silly peek-a-boo game with her, but instead of saying "boo" as I appeared from behind my hands, I would say "mama" (emphatically and with lots of excitement.)  She was actually giggling at me.  RESPONDING!  She even reached for me and made some sort of "m" sound approximation! It. Was. Glorious.  Downright spectacular.

It isn't often, or even ever, that I go to bed at night smiling, and thinking, "this was a really good day."  Most of the time I am too overwhelmed, stressed with life, schoolwork, three kids' schedules, one that includes 30+ hours of therapy a week in addition to her school.  But tonight, no MATTER what the rest of this day holds, I will relax, smile and lock in my memory bank the moments I got to share with my three blessings today. 

I love being a mom.  I am so lucky to get to have this role.  Sometimes the journey is hard, and it's too chaotic to see the beauty in the day to day.  But today was beautiful.  Progress or not, its so nice to see Avery's eyes.  And to know that they see me. 

Moment

I recall the moment.  The exact minute when the first doctor told me for the first time that something was wrong with my sweet baby girl. My first born.  My sweet Avery Grace.  I had so many hopes and dreams for her.  She was so wanted, so loved, so precious to us.  She was 4 months old.  By six months we had a name for the mysterious "spots" on her trunk, face, arms, and legs.  Her very first diagnosis.  Mastocytosis.  I was so naive then.  So hopeful, and so silly.  If only I knew then the path we were headed.... I would have turned and run screaming.  I NEVER imagined such heartbreak.  Such despair.  Such.... a loss.

Fast forward 6 years. I bet I have aged 20.  I would FAIL a stress test.  My mind and body have endured warfare.  I am, by all accounts, overwhelmed. Avery is 6 and a half.  She is beautiful.  She has not made any notable developmental progress since she turned 1.  She has, actually, regressed since then.  Over, and over, and over again. We have had two additional, beautiful daughters since then.  Three total. Thank GOD, our second and third blessings are "typical."  A nice way of saying, they do not have Autism. 

When Avery was 19 months old, I drove away from her neurologist, and cried as I talked to my dad on the phone and explained that Avery had been diagnosed with Autism and Apraxia.  My dad was tender, loving, supportive, and optimistic.  We all were.  Surely Avery would make excellent progress. I was, after all, an autism "expert."  I was already certified in floortime and RDI, and "thought I" knew exactly how to help her.   Whatever.  Soon I would see that my child, (and I have worked with over 100 children on the Autism Spectrum) has the most severe and debilitating kind of autism. She is 6, non-verbal, not potty trained, can not imitate, and does not understand language.  Fuck.  Now what?

So here we are, plugging along, and her therapists and nanny start to notice a change in her. She "checks out" and "twitches."  SHIT.  What is going on.  I try to stay in the moment.  Don't jump ahead.  It will end up being "inconclusive" like every other MRI, EEG and other genetic, blood, and brain test we have had run on Avery.

But, today it wasn't inconclusive.  Today her neurologist confirmed that Avery has epilepsy.  That she has MANY seizures a day.  That she has been unable to make progress because her brain is a fucking mess.  And all I could think was... "this is one diagnosis I am kind of grateful for."  Do I want my child  to have epilepsy?  Absolutely not.  But this is ONE diagnosis, (of her total of 5) that is actually treatable.  Thank god.  So BRING on the meds.  Lets knock this one out of the park.  Finally.

I have had so many defining moments in my life.  Avery has been a part of most of them.  I had several memories and moments with her in the last 24 hours.  I connect with her on many levels.  She reaches out to me for physical touch, giggles at me, glances at me.  And I know that sweet girl loves me.  My other two sweet girls, Kaylin Joy and Presley Hope are not without their challenges and triumphs.  I am working hard to enjoy all three of my precious daughters every day.  To take a moment, and really live in the present.  To remember gratitude.  To embrace the (however fleeting) precious moments I get to share with my daughters. 

I have so much to be thankful for.  I am trying hard to keep that in mind as we face, yet another, debilitating diagnosis.  So again, THANK YOU.  Thanks for loving us. For reading this.  For keeping us in your thoughts.  It makes it all worth it.  Relationships are what makes the world go around.

Acceptance? Not exactly.

Acceptance. It's a lovely word. Or is it?  To "accept" something means you get it, right?  It means you understand the definition, the meaning, the intention or whatever else... and you find it to be true and real. Acceptance, in human psychology, is a person's assent to the reality of a situation, recognizing a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit.  In the world of Autism, acceptance can sometimes be frowned upon.  Some parents might view acceptance as "giving up," or losing hope that Autism is treatable.  There are lots of opinions out there, and to me, though many symptoms of Autism are "treatable" in many kids, for the most part, the core deficits that define Autism are often life long, especially for a kid as severe as Avery.  That's not to say that a kid won't benefit from intervention, be it therapy, diet, medications and so on.  But for me, in order to live some resemblance of a "normal" life, I have to work towards accepting Avery, which includes her abilities and disabilities, just as they are. And to love her, just as she it.  Today.  At this moment. 

I'm not there yet.  The whirlwind of being an Autism momma shakes you to the core.  I have moved from hoping and praying Avery would "catch up" to realizing the reality of her disabilty is such that she will likely always need constant care and supervision.  I started out reading stories of amazing progress and hope. I would call mom's I knew whose kids ended up verbal, potty trained, and even mainstreamed in school.  Now I can't read those stories at all without the constant ache of "why them not us" tugging at my heartstrings.  Heaven knows we have been giving this our all.  Yet, as most of you know, our "progress" is painstakingly slow, often with one step forward two steps back. She is still not the slightest bit verbal. She cannot feed herself.  She is not toilet trained.  She does not understand how to follow directions or stay safe.  And at age 6, we are now very aware that (for us), Autism isn't going anywhere.  

There wasn't a moment when I KNEW that Avery had Autism.  It was a gradual awareness, just as it has been as year by year, we are gradually more aware of just how much Autism impacts her brain, our family, our finances and even our relationships with just about everyone.  I can't pinpoint a moment when I was brought to my knees with sadness, but I can say I have thousands of sad moments.  Thankfully, I have many more happy moments.  My emotions about Avery are so complicated and tend to flip flop all of the time.  I HATE what Autism has taken away from my daughter and my family.  I FEAR so many uncertainties about her future, our future, her health and simple safety. I wish I could "wish"Autism away.  I even wish we had a different variety of Autism.  Autism is as varied as any disease, and unfortunately, ours is one rotten case.  I lay awake at night worried about things no parent should have to... but then I take a deep breath and try to refocus my perspective. I try to remember that within the Autism, is a precious little girl.  My precious little girl.  So though I can't say that I am at a place where I 100% accept "Autism,"  I can say that I 100% accept Avery.  I accept her to be an AWESOME kid.  Not that all kids aren't awesome, but her awesomeness is a little bit different, and I can tell you that at THIS moment, the best thing I can do for me and my family is accept that. 

Avery may not speak, but she shows us she loves us through touch, affection, and approach.  She loves to be held and hugged, and is generally VERY happy and easy going.  See... awesome, right?  Avery is very content.  She is happy to be where ever she is, and as long as she has her beloved ipad, she is a go with the flow little trooper.  We often take our three girls out, and though in many ways Avery is "hard" (due to wandering, not understanding directions, grabbing/spilling food etc) in many OTHER ways she is our easiest child.  She hardly protests.  She doesn't whine.  She willingly holds our hand and loves to watch the world around her.  She is awesome.  Do I wish she could "do more?"  Absolutely.  I wanted more for her. I can't imagine what it must be like to be trapped inside your body having others manipulate your every move and try to identify your every thought. But that is MY issue.  SHE  is happy.  She is perfect just as she is.  She teaches others patience, and unconditional love.  She really is awesome.   So as I strive to move towards "acceptance" I also strive to remember that at this moment, even if I have a hard time accepting all the ramifications of having a child with a lifelong disability, I can handle this.  I have three precious little blessings, one of whom is helping me realize every moment of every day that perfection and normalcy are overrated.  In so many ways our life is so hard, but it is also awesome.  And as long as  I get to live and breathe it, I remain up for the journey and willing to fight hard to enjoy the ride, and to help sweet Avery be all she can be.  No matter how "limited" she is, if you know her, then you know she is one awesome kid.  For now, I can accept that. If you know Avery, I hope you will try to accept that too.

Grateful

A little over four years ago I was thrust in to a world I knew all too much about. I saw it happening to us. I knew exactly what the diagnosis would be. I had seen kids regress before but I must admit I never imaginined it would happen to my beloved Avery. I bit my lip and tried to share with my husband and loved ones what I knew was coming... but the words still stung like none other when I heard them from the "professionals." Autism. Your child has Autism. She may never talk. She may end up in an institution. She will not have friends. She will not develop meaningful relationships. Autism is lifelong. And hers is "severe." Avery is 6 and doesn't speak a word. She seems to understand very little and spends most of her time in her "own world." But she certainly has "meaningful" relationships. With me. with her dad. With her therapists and her adored caregiver. With her Grammy. She may not talk to us. But through touch, sounds, and simple body language... she connects. And despite what any "expert" ever tells us, Avery communicates in her own way. You just have to be patient. Be quiet. Get on her level. Tickle or kiss her, hug her. She will notice. She may not look at you. But she will reach out. With her sweet hand, and she will connect. In her way. I spend way too much time being sad about what Avery can't do. Although try as I might to always remember gratitude, and to be thankful for my precious girl and all that she is...sometimes I get overwhelmed, over-competitive, I over-analyze and over-react. I jump ahead of "today" (despite my better judgement) and freak out about what's ahead of us. Mentally, I know better. Emotionally, I can't help myself. I can "talk" myself out of a pity party. I can remind myself of what an incredible blessing Avery is. And then the next minute I find myself in tears over what Avery will miss out on. Most of the time I have a "grip." Sometimes I just don't. What a roller coaster. After 4 years you would think I would be used to the ride. So part of the point this post is to admit my fears, sadness, and confusion, and the other part is to THANK YOU, my sweet friends and family who take the time to read this. You have stuck by me, my ups and downs, my disconnected sometimes distant ability to be a true friend, and you keep reading. You don't judge me. You lift me up. You love me. You love Avery despite her differences. You wait. And you let go of your expectations of me. Thank you for being such amazing teachers. I have much to learn from all of you. And Avery and I are so incredibly blessed that YOU care about us. Thank you.

Celebrating Another Year

It doesn't get easier. I think a few years ago, I was sure that time would heal, that progress was a certainty, and that, without a doubt, this would get easier. But is hasn't, and I am pretty confident that it won't. That's not to say I'm not up for the challenge, but it isn't any easier. None of it is. Most days we plug along just fine. Every day except Sunday is chalk full of therapy, school, doctor visits and so on, and we roll with the punches as they come. Every now and then we get a healthy dose of perspective, and are reminded that even amidst our many struggles, we have an AMAZING support system, and countless things for which to be grateful. Avery's "progress" or lack there of, has not been one of them. I feel so foolish looking back. After all, I have worked with over a hundred kids with Autism... so I thought I "knew" the path. Boy was I wrong. Avery is "special" in more ways than one, so she is truly unique, and is on her own journey. Some days I feel like she was really handed a raw deal, and the guilt overcomes me and the memories of her as a healthy, typical baby are to painful to even think about. Other days are full of joy, giggles and smiles... helping to remind me that "progress" is overrated and to be thankful for what today brings. I just returned from Avery's 6 year old "WELL" visit. Though in every way her body and mind are far from "well." Questions like "can she feed herself?" "Is she potty trained?" "Can she say any words?" "Can she run or jump yet?" All of which I have to quietly answer "no" and explain that it is not for a lack of trying. Despite thousands of dollars each month of therapy, special diets, a variety of protocols, biomedical intervention, medications, supplements, prayer, and wishes... another year has passed and according to her chart, "minimal to no progress has been made in most areas." We were urged (just like last year) to go BACK to the neurologist, oncologist, dermatologist, allergists to seek more tests for which have yielded no definitive answers in the past, more scans, more specialists, more opinions, more hope, then more heartache as NO ONE seems to have a clue as to why Avery seems to keep regressing developmentally, and biologically as her Masto symptoms year by year only get worse and worse. I hate to sound overly despondent, but I can't begin to describe how gut wrenching it is to not be able to help your suffering child. Every now and then, it is just too much. And it is NOT any easier. So what is the take away? What lesson have I learned from the bucket of tears I have shed today? On a day when so many negatives were pointed out to me, what is there to celebrate? Avery. My sweet, unknowing, simple yet so complex little girl is SIX years old. She is someone to celebrate. Without her I would be so boring. My life would be so "normal." My heart may be a little less wounded, but no where near as strong. She gives me courage, purpose, strength, wisdom, heartache, joy, hope and Grace all wrapped up into a little person who can't speak a word or follow a simple direction. Avery Grace is someone to celebrate, despite her medical mysteries and uncertain future... today and always she is my precious, perfect, first-born daughter who deserves every penny we spend and every sleepless night we survive. THIS is not easier. But WE are ALL BETTER because of her. Celebrate that.

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.