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.

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