Faith, Trust and Pixie Dust (Written in 2012)
Wednesday, March 28, 2012
Faith, Trust and Pixie Dust
One in a million. Once in a lifetime. The odds are...
I know about odds but I don't really gamble. Small percentages have a way of finding me. When I hear "there's a small blank number in an exponentially larger blank number of a chance blank will happen", they might as well say "let me tell you how it's going to go down".
Statistics. I never took that class. Ironically though my college studies were focused on special education, child development in the form of my major "Adaptive Physical Education". I never worked in the field, in fact, I dropped out of college (which was fully funded by an academic scholarship) in my third year to get on with my life. I knew I didn't have the heart to work with children who were disabled; I decided in my third year I could only deal with adults. I did what came naturally to me and went into sales.
God finds himself funny, I'm sure, because that education was not to be wasted.
I am the mother of three children who were diagnosed with Autism Spectrum Disorders. Yes, all three. Please don't begin an argument with me about how autism is over-diagnosed, caused by vaccines or insult me with "they seem fine to me". Just don't. My twins are fast approaching their fourteenth birthday and my youngest just celebrated turning ten.
My twins were diagnosed at age five and autism was discovered when I had them tested for kindergarten readiness. Despite both being very, obviously bright, the preschool they attended for two years did not recommend they proceed to kindergarten due to social issues and concerns. My daughter knew the entire alphabet, out of order by sight, 100% of the time at 16 months; she could sight-read by three years old; her testing scores ranked her in the 17th grade (yes college level); her IQ was, well is, high. Yet she would scream and throw herself into fetal position if, God forbid, someone walked through the gardening section door at Target and that ding went off to announce their passageway into the store. Auditory Processing Disintegration was the first of five diagnoses attached to her file. Her speech teacher and I would start a book of "Madi-isms" which contained her darling, yet out of order phrases from "cloth-wash" to complete non-nonsensical sentences that would put Dr. Seuss to shame. She was brilliant, clearly, but how was she going to fit in to this world? We discovered music and she began at age six violin lessons and vocal training with a trained ABA therapist who double majored in music.
“Music has Charms to soothe a savage Breast” coined by William Congreve, in The Mourning Bride, 1697
Her twin brother did not speak in full sentences until he was almost five yet would not leave the house without an all-out tantrum if I didn't allow him to put the books back on the shelf in alphabetical order. I received many notes of concern from preschool over his biting and obsession with strings; he could string blocks in patterns before he would walk; he would scream and cry until he became beet red in the face if you moved his trains on his train set table from the order in which he left them even if hours prior. The preschool he attended accommodated his need to sit on the letter J on the alphabet carpet in order to avoid the tantrum that would shut down the classroom. At home his stress manifested as bite marks on his sister. He clearly needed order in his life and routine; weekends were painful, the transition from shorts to pants during seasonal changes was remedied by the discovery of zip off pant legs (we bought five pairs of the exact same pair). Another brilliant discovery was tagless tshirts (we bought dozens) and socks without the line in the toe (we bought hundreds). Yes the things we all take for granted could ruin his entire day.
"Part of courage is simple consistency." ~Peggy Noonan
The days were long and draining and my grandmother, my first true soul mate, was diagnosed with cancer that she opted not to treat. Her loss was swift but sweet as I recall the conversations I'd have with her and the comfort SHE provided me. Fresh tears come to my eyes as I allow myself to miss her. The stress triggered palindromic rheumatism in me and I was quickly overcome with daily pain and depression - how was I going to teach my kids to tie their shoes when I couldn't even turn a door knob anymore? I was quickly medicated with arthritis drugs, cortisone injections and thrown on anti-anxiety medication to cope with my symptoms.
Once diagnosed, I did enroll them in kindergarten on time and began the process of securing IEP (Individual Education Plans) for both children. I studied and became well versed in Education Code and fought the battle to secure my children's Free and Appropriate Education in the Least Restrictive Environment. I provided trampolines for their classrooms for vestibular stimulation (which is scientifically proven to increase retention of learning if this activity preceded it). I provided tents and beanbags for hiding in moments of being overwhelmed. The IEP team wrote sensory diets including swinging on the swings before class time, specific seating arrangements, and "brushing with compressions" to calm my son's anxiety. I insisted they be placed in separate classrooms as to not overwhelm one teacher nor the student peers. I was able to secure a shadow (a classroom aide specifically assigned to my child) for my son. I was blessed with two amazingly supportive and creative kindergarten teachers. My daughter's teacher was so creative she not only permitted but encouraged my child to read to her classmates during story time; she read the stories aloud that all the other children were learning to read. I became an expert at writing social stories, specifically designed for their issues until they conquered those, then I'd write more.
My daughter received a diagnosis of Asperger's Syndrome and my son was tested as High Functioning Autism. The group therapy they attended called "Friends' Club" through Comprehensive Autism Services and Education was invaluable in their recovery. I became trained in ABA (Applied Behavioral Analysis) therapy in order to not only help my children in between therapy sessions but also as an attempt to barter and trade for their therapy services through our local autism center. While they were in their own therapy groups, I would work with the teenage group. I had to be reminded, often, that "being on 80% of the time" was okay, but if you know me, I'm incapable of giving less than my all.
Welcome to Holland
By Emily Pearl Kingsley When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans... the Coliseum, Michelangelo's David, the gondolas of Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!", you say. "what do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life, I've dreamed of going to Italy!" The stewardess replies, "There's been a change in the flight plan. We've landed in Holland and it is here you must stay." The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It is just a different place. So, you must go and buy new guidebooks. You must learn a whole new language. You will meet a whole new group of people you would never had met. It is just a different place. It is slower-paced than Italy, less flashy than Italy, but after you have been there while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That is what I had planned." The pain of that will never, ever, ever go away because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
We spent many hours in the therapy offices of CASE (Comprehensive Autism Services and Education), as well as Tri-City Hospital for occupational therapy. I enrolled my children in a therapeutic horsemanship program called REINS which provided all three with several hours a week of hipppotherapy. I went above and beyond to find every possible way to help my children recover from the painful symptoms of autism that became my world.
I resigned from my successful sales career in order to become advocate, therapist and full time mom upon the conception of my third child, a beautiful, bubbly baby boy who would arrive months later, a week early. He was born "normal" (neurotypical) but by 18 months was clearly showing signs. I remember his first word: DUCK. Everything was "duck" and he was adorable, especially at the Wild Animal Park. But then one day that word disappeared and was replaced with "Buzz"; everything was Buzz but where did duck go? Through the hours spent at the therapy offices, the owner carefully and cautiously approached the sensitive topic of recommending an assessment be done for him. He was diagnosed as severely autistic at 22 months. You'd think after going through this twice already I wouldn't have reacted as if I'd just been punched in the gut by a prize fighter. I was equally as devastated and the third diagnosis did not settle any less painfully than the first two.
Through our school district and regional center he began receiving early intervention services for forty hours a week. This child's symptoms manifested in the most concerning way; he learned much, then regressed. He was regressing to a degree that prevented me from ever leaving my own home; his anger and frustration lead to outbursts and injuries to his siblings and a small house fire by age four. 9-1-1 was dialed many times during his toddler years when sensory stimulation would become so overwhelming he would "disappear" to a hiding spot. I did not hesitate to get help. He received four days a week of special day preschool, including adaptive physical education services, speech therapy as well as occupational therapy services, and one-on-one ABA therapy in our home after school. I cannot imagine what we would have done for this child had ABA services not been available to him. By age five, he was diagnosed as "recovered from autism" by the school district, would speak in full, fluid sentences, began making friends, was enrolled in dance team to maintain social interaction and work on his focus. He is now a competitive hip hop dancer and successful, working model through a Hollywood agency. His dream is to be on television some day. I have no doubt he'll accomplish his goals.
I am pleased to share that my daughter, through early intervention music therapy combined with ABA, has now participated and performed in choral groups through her middle school, regularly participates in on-stage theatrical performances through our local community theater, and is vying for Miss Teen in our home town. My son, her twin, is a star athlete, making his basketball league's All Star team now three years consecutively. He receives awards and accolades from coaches and teachers for being a natural leader and a "good kid" who follows the rules. Both earn good grades and have friends through the help of intense individual and group counseling throughout their early years. Both have also received "Student of the Month" at their separate middle schools. I take great pride in their accomplishments but only someone who is parent to a child whom "experts" recommended be institutionalized at age eight, can comprehend the level to which my pride manifests. Without early intervention utilizing ABA therapy I can not even allow my mind wander to where they'd be today.
Our neighbors reported our family to the local sheriff for "trafficking concerns" due to the many hours and many therapists involved and required to report the successes I am today. I write tearfully as I recount the memories of the first ten years of their lives while suffering through autism. There is SO MUCH more to this story - nine years worth - but I think you all get my point. Life was far from anything that resembled "easy".
My point is that I don't want to imagine my children's lives today without the history of ABA services and I don't believe ANY family should have to suffer because their child is affected by this recoverable condition.
COPIED AND PASTED from Autism Speaks' website: *This information has been provided by First Signs, Inc. ©2001-2005. Reprinted with permission. For more information about recognizing the early signs of developmental and behavioral disorders, please visit http://www.firstsigns.org or the Centers for Disease Control at www.cdc.gov/actearly.
Learn the Signs of Autism
Autism Speaks' multi-year Ad Council public service advertising campaign stresses the importance of recognizing the early signs of autism and seeking early intervention services.Research now suggests that children as young as 1 year old can show signs of autism. The most important thing you can do as a parent or caregiver is to learn the early signs of autism and understand the typical developmental milestones your child should be reaching at different ages. Please look over the following list. If you have any concerns about your child's development, don't wait. Speak to your doctor about screening your child for autism. While validated screening for autism starts only as young as 16 months, the best bet for younger children is to have their development screened at every well visit with a highly validated developmental screening tool. If your child does have autism, early intervention may be his or her best hope. (The following red flags may indicate a child is at risk for atypical development, and is in need of an immediate evaluation.) In clinical terms, there are a few “absolute indicators,” often referred to as “red flags,” that indicate that a child should be evaluated. For a parent, these are the “red flags” that your child should be screened to ensure that he/she is on the right developmental path. If your baby shows any of these signs, please ask your pediatrician or family practitioner for an immediate evaluation: No big smiles or other warm, joyful expressions by six months or thereafterNo back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafterNo babbling by 12 monthsNo back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 monthsNo words by 16 monthsNo two-word meaningful phrases (without imitating or repeating) by 24 monthsAny loss of speech or babbling or social skills at any age
My rebuttal: Autism Speaks, on your website, on this particular page http://www.autismspeaks.org/what-autism/learn-signs, you have a photograph with the words across the photo that state:
"Odds of your child becoming the next Tommy Hilfiger: 1 in 23 million. Odds of a child being diagnosed with autism: 1 in 110." ~Ad Council
Well my child was one in 110 and may not be the next Tommy Hilfiger but he is proof the recovery from autism is possible.
"Odds of becoming a model for Tommy Hilfiger after Early Intervention: 1 in ? - It's possible." Julie Marie Miller
Dani Brubaker photography