Her story under age 14.... "Fight when you know you're right." ~ Julie Marie Miller
Tuesday, April 3, 2012
"Fight when you know you're right."
It was a weekend afternoon, I can't recall if it was a Saturday or a Sunday. I lived around the corner from their house and would pay visits to my parents' home frequently with the twins. It was a September afternoon, making her sixteen months old. My parents kept a few toys in the house to keep the babies from grabbing breakables as any good grandparents would. Their favorite toys were the old school Little People toys my mom had held on to since our childhood; the camper, the two-story house and the school house with the magnet set.
My dad held up an "s" and she said "S!" We all giggled at the coincidence and how adorably and enthusiastically she said it. I held up a "p" and she said "P!" Now this is just a fluke, there's no way.... My mom, my dad and I all looked at each other and kept randomly selecting letters. She knew every single one of them. All 26. I sat there proud but puzzled. My daughter wasn't near her year and a half milestone but could read. I read to the twins nightly and one of their favorite books was Dr. Seuss' ABC book; I would go hoarse reading that book to them because as I finished "a Zizzer Zazzer Zuzz as you can plainly see" she would immediately follow with "Again! Again!" She spoke on time with "mama", "papa", "dog", "cat" and other household words like "more" and "again" but was not quite speaking in full sentences. But she knew the entire alphabet, in no particular order, by sight, 100% of the time.
By two and a half she would exclaim "That says 'THOMAS'!" if we were sitting at a red light behind a yellow school bus. While awaiting for her brother to finish up with his speech classes she would look up at signs and ask "What's that say momma?" and I'd reply "no parking" and she'd say "I know that, what does it say underneath?" and I would accommodate "Unauthorized Cars Will Be Towed...."
The first book she read before her two and a half milestone, completely independently, on her own was Natalie Underneath: "Where's Natalie? If she's not underneath the table, she's hiding underneath the laundry basket. She might be looking at the spiders underneath the porch stairs, or having a picnic underneath a big umbrella."
I would continue to read to the twins nightly to the sweet sounds of "again! again!" as my voice grew raspier and raspier through the years. Her twin brother joined in on those exclamations around three and a half years old just as they were completing their first year of preschool and we were expecting the arrival of their little brother a few months later. I knew I had a very bright little girl on my hands which kept my mind busy and my sanity exhausted by never-ending questions full of curiosity with the quest for knowledge that she couldn't gain fast enough. She never called a dog a "dog"; it was always "dalmatian" or "poodle" or "boxer". Birds were never a "bird"; they were "crows" or "doves" or "seagulls". There was also a cute habit of taking on accents that she'd encounter on television and through Disney movies, even becoming a Texan for a short time but, at times, her chatter was non-nonsensical so I began to jot it down in notes; "cloth-wash", "soap-bath", "brush-tooth" and then I would try so hard to understand what she was trying to share with me when saying things like "he's nice, that man, haired-brown mustache, funny."
What did she just say?
"Auditory processing means the ability to translate the stream of vocal speech sounds into words and meaning, and then recreate those sounds as speech."
Her first diagnosis was Auditory Processing Disintegration after hearing tests were completed and was determined to be perfect. She began speech therapy immediately.
Fast forward to the end of preschool as the teachers perform kindergarten readiness testing, a year and a one-year old baby brother later, she was deemed to not meet the recommendations and benchmarks needed to proceed successfully. "After TWO full years of preschool? Really, you must be joking." I retorted. Off to have an independent assessment performed so I could enroll her in kindergarten on time through the school district. What would happen next should happen to no parent of a clearly bright, ambitiously intelligent, curious little girl. In March 2003 I was punched in the gut by a thorough and professional assessment performed by a Doctor of Psychology, renowned and revered as an expert in her profession; the diagnosis of autism spectrum disorders. After two sessions and about five hours of testing I was told my daughter had Asperger's Disorder.
"Asperger syndrome, also known as Asperger's syndrome or Asperger disorder, is an autism spectrum disorder (ASD) that is characterized by significant difficulties in social interaction, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported."
Now that I thought about it, she did fall... a LOT. Her clumsiness was just a cute, little quirk until that moment of truth.
Her twin brother was simultaneously diagnosed with High Functioning Autism (HFA) which is a blog for another day but did not come as a surprise to us like this did. When you know you have a bright child on your hands you do everything you can to embrace it, support it and watch it flourish and allow her opportunities to shine. The last thing you expect to hear is bad news.
I realize and am not arrogant enough to think that this is nearly as devastating as the loss of a child. A tragic accident did not befall our family. No one died. Although there were no less tears than as if someone did as I researched, acquired, read and consumed every possible piece of information I could get my hands on before the days of easy access to Google and Wikipedia. I joined the Autism Support Group recommended by the diagnostician. I became a dues paying member of the local chapter of the Autism Society of America, voluntarily taking on the role of Vice President when the new board members were voted in. I enrolled my daughter in the local hippotherapy program where she began riding horses two days a week to stimulate her vestibular system. Secured occupational therapy which recommended she wear half-pound weights on each foot, attached to her shoes in order to provide the biofeedback to her brain that wasn't quite making it there and back which is why she stumbled and fell so often. She continued her speech therapy and got a prescription for glasses as soon as we saw that the occasional wandering eye when she was tired begin to wander during the day.
She entered kindergarten with an IEP (independent education plan) secured noting certain modifications necessary, including speech therapy services, occupational therapy and accommodations within the classroom. She was placed in the general education classroom with 25+ of her same-aged peers which was determined to be her Least Restrictive Environment for her Free and Appropriate Education. With a very creative and patient teacher she made it through, although her tantrums were only beginning.
Upon a routine physical exam, knowing her psychological history as well as her medical history our pediatrician recommended a full work up by a neurologist for my daughter and considering my health history (which is another story for another blog) I agreed this was a good idea, although I was told my children's chances of having brain tumors were as rare of a chance as it was for me to have one. We saw the best of the best, the top pediatric neurologist in San Diego County and as he reviewed her lengthy history he came to his own conclusion with almost an "ah ha"-like revelation, a little too excitedly announced to us his findings as if he were pleased with the news he was about to share with us.
Ever since the birth of her fair-skinned, red-headed, baby brother my daughter earned the affectionate, endearing nickname of "my dark baby" with her smooth brown hair, big brown eyes and skin that didn't have a cap to its level of darkening and tanning... but what WERE those white patches on her upper arm?
Hypomelanosis of Ito - Her third, official diagnosis. How could little white patches of skin translate into nervous system manifestations, cognitive and behavioral problems as well as other neurological manifestations...? We were asked if she experienced seizures and although she did not, we reported everything peculiar we could think of including her "space outs" where we'd lose her for a little bit assuming she had escaped to her own thoughts and the "screaming bloody murder tantrums" that would have strangers prepared to dial 9-1-1 to report a possible kidnapping in progress.
Noise would overwhelm her to the point of going into fetal position, covering her ears while screaming and crying. Noises that we would hear as background noise came at her full-throttle. There was no filter installed in her brain and the doctors told me that all those little noises we hear throughout our days like air conditioning units humming, traffic passing by, birds tweeting sweet noises in the trees in the Springtime; those all came at her at full volume, all at once. And that was just her ears. Changes in lighting had the same effect. So did changes in temperature. I would spend many days, looking at my daughter realizing that just waking up each day to take on another day was more than most people accomplish in their lifetimes. I became grateful for days where there were only two to three tantrums instead of the routine four to five, forty-five minute in length ones per day. I became thankful for days where my neighbors weren't calling Child Protective Services.
My daughter was hurting and I didn't know what to do to help her. She entered first grade as a Special Education Student, continued to second grade with Resource Services and proceeded on to third grade with increased and modified Resource Services and then came the day in which my daughter saw me cry for the first time in front of her. An urgent phone call. My daughter had run onto the main road and was in traffic (a four lane highway with speeds upward of 45 mph IF people were observing the speed limit). They chased her but couldn't get her to calm down. Could I come over to the school. For the first time I felt weak, helpless, defeated. I wanted to know what she was thinking. I wanted to understand what she was running away from. I needed to know so I could help her, help the staff who'd grown to care for her, help our family raise her in the best environment, help the schools educate my daughter who had an IQ equivalent to that of a graduating senior. She had put herself at risk but we moved forward having immediately placed her back into the special education setting. While we scheduled a new IEP meeting and coordinated everyone's schedules I got another urgent phone call. She had thrown her desk in the classroom and they had 25 extremely shaken and upset third graders. I needed to come pick her up and take her home immediately.
I attended my first Autism Society of America Conference in Nashville, Tennessee in 2006 which was the first and only time I left my children. During the conference I attended many seminars, lectures and workshops, one at which I met a diagnostic physician who specialized in diagnosing and treating children with symptoms similar to my daughter's. I received all of the forms, completed them and intended to have my daughter and I fly to Florida for a full clinical assessment at their in-house assessment facility as soon as I returned to California.
Her father pleaded with me to try a few more interventions and diagnostics within our state. We kept her in her group social skills therapy but decided to add one on one intervention which had proven to be so effective for her baby brother. She spent the next three months with one on one therapists for hours each week even including a music therapy program where she would play violin, keyboard and receive vocal training in which they pushed her hearing sensitivity to its limits then back it off.
During that summer I researched and sought out any other diagnostics and interventions that would help my daughter get through one day without suffering. I found a grant program that funded a SPECT scan and applied through their program. A few weeks later she was granted the cost of the a scan that would not diagnose her but provide a diagnostic tool for the psychiatrist we had secured to help us determine what was wrong with our child. After injecting dyes in her tiny little veins, having her complete a computer generated exam then requiring her to lie still in an MRI we were presented with the results: Ring of Fire. We didn't know what that meant but the ring of fire was indicative in other patients who had a history of BiPolar Disorder. This diagnostic tool would coincide with the recommendation from the autism center she had been going to for two and a half years that they "could not help her anymore as the current interventions were not showing any signs of progress nor improvement in her behaviors" which was to be expected with this level of intervention. We were given a recommendation that we should seek help elsewhere for the symptoms and struggles that would not be remedied through this course of therapy. The one on one therapy that improved so many lives, including her baby brother, had not made a dent in her behavior.
I was referred to a psychiatrist to whom I hand carried the results of her SPECT scan, her extensive therapeutic notes, her previous three diagnoses and my eight year old little girl. The Diagnostic Statistical Manual prohibits someone from under 18 being formally diagnosed with BiPolar so the doctor focused on working with me on techniques I could utilize at home while he interviewed and observed her to determine what would be the best course of treatment for my little girl. A few months and thousands of dollars into this process he sat me down and looked me straight in the eye and said "you may have to consider the possibility of an institutional learning facility." I don't remember saving my tears for the car ride home that time. I broke down immediately in his office as I heard him say "she will never feel empathy, compassion... she may never be able to live an independent life. You need to consider the fact that she may live with you forever if you do not consider looking into the option of residential treatment." All I can remember is wanting him to stop talking. I agreed to a medication trial but the medication prescribed had to be ordered through a compounding pharmacy since it wasn't routinely prescribed to children. My daughter was put on anti-psychotics and a mood stabilizer in order to cope with the symptoms and resulting behaviors manifested by her latest diagnosis: Cyclothymic Disorder.
"Cyclothymic disorder, is widely considered a milder or subthreshold form of bipolar disorder. Cyclothymia is a chronic mood disorder that is characterized by numerous extreme mood disturbances which fluctuate from one’s baseline with periods of hypomanic symptoms alternating with periods of mild or moderate depression."
The tantrums stopped almost immediately but so did the music and so did the paintings. The teachers were pleased, the urgent phone calls stopped but I missed my daughter. I wanted her back. I stopped the medication, took a deep breath and a leap of faith.
A business move her father made determined the next course of action in her education. It took us away from the district I had spent years proving to, much to many teachers' dismay, that my daughter "did not just need a little discipline." We would move to a remote area of Northern California where the term IEP had to be looked up for its definition. Lacking an appropriate special education department my daughter was placed in the only classroom they could find that was suitable. She was to wear a uniform, attend school at off-hours from the general population, eat lunch only with her classmates (whom by the way had stabbed or assaulted a few teachers or other students to earn the same placement); due to this "special" placement she was not permitted to interact with any other children on campus. The phone call came from the principal of that school who also happened to be the superintendent of the district (yes that's how small the town was) to inform me that he was on the phone with the Sheriff and that I should head over quickly. My daughter had locked herself in the bathroom, as well as within a stall and was screaming so loudly that the office staff could not talk on the phone. I immediately removed her and began home schooling her the next day. At the end of that school year, the IEP team members decided it was in her best interest to return to a regular education setting but not before informing us that she would be retained in the fourth grade (for the record, this is illegal for a child with an IEP). Little did I know just a few months later that her father would decide he was done with our family. He filed for divorce and I was restrained to the area. I was not to leave this county with the children in my care nor possession.
Five months later, I walked away from everything. He got the assets and I got the kids. That was how this had to go down if I had any intention of returning with my children to the only home they'd ever really known and the school district that understood my daughter. I won, if winning is considered leaving with all my personal possessions that I could fit in a 29 foot U-haul, no alimony and no child support. I didn't care, I was taking my kids back home.
It was late in the school year, March of 2009 specifically, and the twins were enrolled back in the school they had just left a year and a half prior; my daughter into her retained fourth grade placement and her twin into the fifth grade to finish off the school year in June. It didn't take 30 days for the school district to realize that something was terribly off, did a quick battery of academic assessments and promoted my daughter to the fifth grade. She would complete this grade in less than three months and proceed with her same aged peers to the sixth grade when she returned to school in the Fall.
Her social issues were still present. Her daily upset stomach leading to frustration from her twin brother over being late again and ruining his perfect attendance record. Her frequent trips to the school nurse's office. Her begging and pleading to take "just this one day off of school." Her grades were diminishing with report cards full of Cs and Ds as well as "unsatisfactory behavior". More assessments were done and a new diagnosis would arrive: Attention Deficit Hyperactive Disorder.
Children who have symptoms of inattention may: Be easily distracted, miss details, forget things, and frequently switch from one activity to anotherHave difficulty focusing on one thingBecome bored with a task after only a few minutes, unless they are doing something enjoyableHave difficulty focusing attention on organizing and completing a task or learning something newHave trouble completing or turning in homework assignments, often losing things (e.g., pencils, toys, assignments) needed to complete tasks or activitiesNot seem to listen when spoken toDaydream, become easily confused, and move slowlyHave difficulty processing information as quickly and accurately as othersStruggle to follow instructions.Children who have symptoms of hyperactivity may: Fidget and squirm in their seatsTalk nonstopDash around, touching or playing with anything and everything in sightHave trouble sitting still during dinner, school, and story timeBe constantly in motionHave difficulty doing quiet tasks or activities.Children who have symptoms of impulsivity may: Be very impatientBlurt out inappropriate comments, show their emotions without restraint, and act without regard for consequencesHave difficulty waiting for things they want or waiting their turns in gamesOften interrupt conversations or others' activities. (http://www.nimh.nih.gov/health/publications/attention-deficit-hyperactivity-disorder/complete-index.shtml)More IEPs and another change in placement but this time she would be labeled by the school district as "Emotionally Disturbed" under Other Health Impairments. I went with it, whatever it took to get my daughter the right placement to get her through this mandatory education. The only problem was there were no appropriate classrooms to accommodate her needs within our city; she would need to be bussed to another town but the school district insisted that I would be provided transportation and we were. Every day for the past two and a half years a bus has arrived at my doorstep to drive her to school and every afternoon she is deposited back in the very same spot about twenty steps from my door.
What has transpired over the past three school years is short of a miracle. My daughter joined the Choral Group at school and performed musical numbers and community concerts including a performance at Disneyland last year. She has been invited on sleepovers and came home without crying or confusion. She has brought home three Honor Roll certificates and report cards that contain nothing but As, Bs and that she "is a pleasure to have in my class". She has performed in stage performances through community theater. She has BFFs who truly WANT to be her friend. She has relationships now that she's had for years. She has anxiety but talks herself through it and comes to me for advice or simply just to have me listen.
She's still clumsy. She still struggles to focus but has developed organization skills to cope. She suffers from insomnia but has downloaded an app on her phone that helps her brain settle. She still struggles to understand social norms. She's a little too talkative. She still argues her points. She still plays with toys but if I'm paying attention closely I can overhear her re-enacting the social anxieties of her day utilizing replaying and resolving through role-play. She also still sings constantly, she also plays in piano recitals, she also reads 300 page novels in a day and a half, she also creates art and drawings that I frame over my desk. She also wakes up every day and is the strongest human being I have ever met in my life. She also received rave reviews for her latest stage performance although she did not score a lead role.
I sat back at my daughter's trienniel IEP this afternoon, the third one in her academic history, and listened to report after report from teacher after teacher of her hard-working citizenship, her upbeat attitude, her stellar work ethic and impressive academic performance. The examples of leadership, determination in her studies, her contagious personality across campus and multiple recommendations for honors classes for her freshman year of high school. I knew what was coming and I braced myself to hear it. She was a success and there was document after document containing assessment after assessment of irrefutable truth that my daughter was to be exited from her IEP that had carried her through her elementary and middle school academic career. I couldn't argue. I had no leg to stand on. She was a success according to the entire IEP team that included the newly appointed Director of Special Education who I have been on a first name basis for many years now. She no longer needed their support, accommodations, behavior support plan or any special education services. They beared with me as I recounted the years of struggles. They were patient through my tears although the most recent members of the team sat in disbelief as I recounted the years of stories of hardship, pain and emotional struggles. The Director and I reminisced over six hour IEP meetings that were in our not so distant past.
Today I did something I said I would never do.
I signed in agreement the release of my daughter from her IEP. I cried the entire drive home with a purging of emotions that I couldn't quite understand as they flowed freely from my eyes. The pride of knowing that I fought the good fight, that the years of hard work, dedication and never quitting had paid off. Never believing the statements that involved "She can't... She won't... She may never". I let the realization that I am a good mother sink in.
I preach it to my children constantly and the purging of emotions makes me realize that I believe this statement with every ounce of my soul:
"Fight when you know you're right." ~ Julie Marie Miller
As I still sit here hours later, processing the emotions that landed in my lap today, tears are still free flowing for the daughter I was challenged to raise. I came home from the meeting today with mascara running down my face to be asked by my fast approaching 14 year old daughter "Mom? Have you been crying?" and proceeded to share that she's been so successful that I made a very brave decision today and the staff at her school and I have decided she's earned her wings.
Fly, baby girl, fly!
Written in 2012 after the IEP that exited her from all of her supports.
Little did I know what was coming....