Saturday, July 18, 2009

The story..... Thus far

Seven years ago, at the tender age of 19, I found myself unmarried and pregnant. I made a commitment to my unborn child, following my heart and my convictions. Little did I know of the life-altering choice I had made and how far-reaching the effects would be. Eight months later, my beautiful little girl was born with a full head of dark brown hair and content, almond shaped blue eyes. Her daddy and I worked hard to fulfill her newborn needs as well as learning to let go of our idea of what our “young 20s” should be like.

She was hospitalized for the first 2 weeks of her life with jaundice and apnea—a boot camp for me, with instruction in both medical terms and diagnoses as well as the true depth of parental love. I was terrified. She came through marvelously, and came home to an ecstatic set of grandparents as well as her exhausted but relieved parents. We lived with my future husband’s parents for five years. Their support has been invaluable, though hard on me for my private, independent nature. Things went well, the typical sleepless nights and bleary eyed days of new parenthood. After 4 months though it became evident to me that my little roly-poly bundle was not developing as the children I had been around all my life. At 6 months, she couldn’t lift her head up off the floor while laying on her tummy in the “tummy time” position. Fearful once again, I took her to the pediatrician.

She was diagnosed with low muscle tone, and Katie was sent to physical therapy to strengthen her “floppy” muscles. We were also sent to a genetics specialist, a neurologist, and a developmental pediatrician. Numerous tests and blood draws yielded no unusual results and no answers. Her wonderful pediatrician called her the little Buddha baby. Content to sit and watch the world… not to mention adorably chubby! She was a happy, easy going baby. At 12 months, she was not babbling or talking so we were sent to speech therapy. My biggest concern was her lack of eye contact and interest in the people around her. Katie enjoyed staring at ceiling fans and light bulbs, and played with her toys in any ways but those they were intended for. She took great pleasure in scraping a DVD across the floor like a DJ scratching a record, until many of our favorite movies were useful only as coasters. At the age of 3, Katie finally learned to walk. I could not imagine a better day! She was unsteady and nervous, but walking nonetheless! Still no words, but she was learning to “control” us by taking our hands to the objects she wished to manipulate. We started calling her “Bossy Boots” because of her cute winter boots and ability to clearly dictate her wishes without words or eye contact! It also became clear that Katie had an aversion to chewing or textures in her mouth. She has eaten baby food purees since 6 months old.

When Katie was 6 months old, I enrolled in culinary school to pursue my dream of becoming a catering chef. I worked part-time and went to school, also taking Katie to 3 therapy appointments each week. While it was incredibly difficult to attend school, work, and try to be a mom to Katie, I found an outlet in the culinary world where I could perfect my skills in an environment that I could control. On the day of my graduation from school, my worst fears were confirmed. Our genetics counselor told us that at the rate Katie was going, she would never catch up with her peers. It wasn’t a surprise, but just that someone finally had the guts to tell us the truth. Still, without a diagnosis, I was nothing but motivated to find a way to help my daughter. I immediately quit my job at the Coeur d’Alene Resort, where I was working overtime and commuting nearly 2 hours each day. I knew that there was no way I could be a good mom to Katie with that much time away from home. I was offered a job close to home and started researching alternative therapies.

I struggled with depression and disappointment, both with motherhood and my own expectations. I was hoping to be the intellectually nurturing mother my mom was to me--raising an independent, curious child with a large vocabulary and mild temperament. I was disappointed in myself, as Katie’s challenges left me exhausted and feeling inadequate. The constant watchful eye of my in-laws was often humiliating and critical, although never to my face. But my young husband was quick to convey their concerns and suggestions which left me feeling frustrated and invaded. I quote myself as saying ever so often, “All I signed up for was an unplanned pregnancy!” I had no idea how life-altering my little girl would be.

Katie developed seizures at age 4, and the developmental pediatrician told us “Well, with a child with this many problems, it’s not uncommon to see seizures.” That was crushing. I also had finally gotten someone to address my concerns about Katie’s deficits in relating and communicating, which lead to the autism diagnosis. Although autism doesn’t adequately describe all of Katie’s special needs, it definitely helps to define her difficulties in speech and understanding others. She also had an aversion to loud noises and electric sounds such as the blender or vacuum cleaner running. I did a fundraiser selling homemade biscotti to attend a conference in Washington D.C. about an alternative approach to autism treatment. The most rewarding part of the “Floortime” program is that it doesn’t matter what the child’s diagnosis is (or lack thereof) but specifically addresses each child’s individual needs and deficits.

It seemed like every year or so we find another piece to our Katie puzzle. Time passes quietly and milestones are achieved slowly, and then another “shoe” would drop so to speak. Though I have told this story many, many times as you might imagine, I always conclude the list of Katie’s special needs with the reassurance that Katie is incredibly happy and healthy… She really doesn’t seem to know what she’s missing. So her struggles are largely on our shoulders, her parents, her family… Katie is the most joyful, amazing, hilarious little girl with a smile that could brighten the entire world and a laugh that could warm the hardest heart. Her simple joys are more than enough to remind me that life is what you make it.

Katie’s only concerns are who’s going to spin the sun umbrella in the yard for her, and how to get her favorite DVD (usually Cinderella but often Cars) to appear on the TV. She loves toys with wheels (well, even things that aren’t toys!), baby dolls, and anything that spins. She also has learned to “gum” Kix cereal and other soft crackers, which she will eat all day if you let her. She gets super excited now watching other kids—a new development for her, as she found children to be too loud, fast, and unpredictable. We took her to see the new Pixar movie “Wall-e” and she spent the entire time facing away from the screen, watching the kids in the audience and laughing hysterically. We had to leave early because she got so squirrelly and excited. In her special needs class at school she is the darling of both the teachers and the other kids. The other children rush to “help” her walk and get her walker, to help her to her seat, and just to be near her. It is heartwarming to watch these amazing kids with their own struggles take such a tender interest in Katie. One boy called her “his” girl.

As life would have it, Katie’s daddy and I are divorced after nearly 5 years of marriage. While that’s a whole other story, suffice to say I’ve grown up a lot since I found myself pregnant at 19, and our struggles have left lasting scars on our relationship. As I reevaluate my life and Katie’s and my own needs, I find the desire for stability overwhelming. I work full time as a cook, which fulfills my passion but doesn’t pay as well as I’d like. I am “putting in my time” though and hope to be a chef within the next 4 years. I try very hard to keep a home that is safe and comfortable for Katie, and for now she is living with her father. Our goofy, lovable black lab, Joey, will be joining us as both “security guard” and snuggle buddy. My dream is to find a home where we are comfortable and secure, maybe with room for a little garden.

The purpose of this blog is to hopefully connect with other parents of undiagnosed or similarly affected kiddos for networking and support. I love my little girl more than life itself, and I know what it's like to have no formal diagnosis or "roadmap" for the future.