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.