This is part II of an ongoing series of 3 blog posts by Lori Gertz about the process of becoming an advocate for her growing special needs child. Click here to read the first part of the series.
IEP As defined by the United States Dept of Education:
Each public school child who receives special education and related services must have an Individualized Education Program (IEP). Each IEP must be designed for one student and must be a truly individualized document. The IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability.
Emily aged out of the Early Intervention Program which provides support from age 0-3 on January 5, 2006. At the time we were living in Cook County, Il so the Intervention social worker set me up to have her assessed for the ongoing support services that would be provided by the local school district. The natural flow of support for children in need of special services seemed seamless as we had her evaluated just weeks following the time she aged out of the current Occupational Therapy(OT), Developmental Therapy(DT), and Social Work(SW) she was receiving for what was labeled Sensory Integration/Processing Disorder at the time. This was never a formal diagnosis, but merely a collection of symptoms of her more physiological and psychological issues at that time, as yet undiagnosed.
She was evaluated “clean” and clear of need for any services through the school system. I was shocked and disappointed, as was the Early Intervention team, so they worked with me to find continuing support resources that we would begin on a private pay basis.
I spent the majority of that year seeing doctor after doctor looking for some insight as to what might be the basis of the cause of Emily’s challenges and was told everything from she was fine and I had MSP (Munchausens by Proxy), to this being a clear cut case of Reactive Attachment Disorder (RAD) and that she hadn’t bonded to me because I wasn’t her biological parent.
I realized the whole matter of finding her support was now hinged on finding a true diagnosis for disability to attach to her need for a fair and appropriate education. Amidst this mess of looking for answers, we relocated to another county and prayed they would be more open to providing the support Emily needed when she was ready to go to school.
In the meanwhile, I was painted as someone who just didn’t understand the nature of this child not born of my womb, and told that perhaps I wasn’t the ideal adoptive mother for her. I had also been told that the child was obviously abused before the adoption, and when I replied telling them she had been placed with me as soon as she was out of the womb, I was then suspect FOR that abuse. I went from being the investigator to being the investigated, as our young child, covered with bruises from self mutilation, rashes from undiagnosed allergies, reflux, and the inability to be soothed developed new sensory related dysregulations on a daily basis.
While we paid for OT, DT and cognitive behavioral therapy we also paid to see neurologists, biomedical physicians, psychiatrists, psychologists, developmental pediatricians, dermatologists, and allergists, to the tune of 38 consultations. On the 39th appointment, I got my answer. It was right there on her face the whole time, Emily had 3 clearcut indicators for Fetal Alcohol Spectrum Disorder. She had facial abnormalities, including smaller eye openings, flattened cheekbones, and indistinct philtrum (an underdeveloped groove between the nose and the upper lip). She also had a historically small head circumference dating back to her birth.
For 3 years I had internalized that I just couldn’t parent this child. I was being told by doctor after doctor that nothing was wrong with her and that I needed to look to myself for why I couldn’t soothe her. Why it took finding an expert in FASD to make such a physically obvious diagnosis, I will never know or understand. Why do physicians bother to measure the head circumference if they never evaluate it for abnormality? I went from trusting physicians to doubting all of them in one swift diagnosis. I also blamed myself for not knowing what I didn’t know to know.
Advocate on Training Wheels: Early Childhood Special Needs Programs
FASD is not a diagnosis anyone ever wants to hear. It is a grim sentence for those that are labeled with it and the parents of those raising those children aren’t given much hope for the milestones one usually hopes to reach in the adventure of raising a child.
Craig was devastated and very angry at the birthmother upon hearing our expert as he explained and showed us benchmarks of the levels of drugs and alcohol that potentially caused this child’s genetic misfortune. What he left out that day, probably to save us the further heartbreak, was his substantiated research that 90% + of kids born with FASD are locked and loaded for a multitude of other co-morbidities, as the birthparent who drugs and drinks while pregnant most certainly has other emotional/psychological burdens. We left that day with our diagnosis though, and most certainly there would be no school district in the country that could turn their back on giving services to this child now, or so I thought.
Having a real medical diagnosis in hand and having relocated created the opportunity to start again with our new county jurisdiction and have her reevaluated for special education and the IEP.
No later than 2 weeks after our diagnosis, I received a call from our birthmother’s brother as he reported that the police had just left his home and that she had been found dead of an apparent suicide by drug overdose after being released from jail that morning. No closure for us, no closure for Emily, just a damaged brain and a legacy of prospective co-morbidity to live out.
Emily was re-evaluated in our new county of residence for the Special Education program and her need for services on her IEP was identified based on her medical diagnosis code of “other physical impairments”.
She was matriculated into the summer and fall Early Childhood Special Education program in our district and provided OT and Social work services in the school setting. She was a real leader in her classroom setting and had an excellent year with a small classroom size, ideal teacher student ratio and support for her emotional dysregulation.
In larger classrooms and without the appropriate support children with FASD have a hard time making and keeping friends. They have difficulty reading and understanding social cues. In Emily’s case, she has boundary issues and often misreads people as hostile when they are not. She internalizes the hostility and either responds with hostile behavior towards them or herself. If she reads a cue that tells her the children don’t like her, she will self mutilate by itching until she bleeds, pounding her head on the floor, or biting herself.
If the classroom or setting is appropriate to her needs reflecting the environment that enables her to maintain her level of comfort and composure, she can maintain her balance. Her early childhood classroom did just this for her, so of course, throughout the year the administrators would see me and comment, “Emily’s doing great. We can’t see any reason for her to be in that classroom.” As a result of her surpassing her performance goals (which had minor educational implications and were more based on the social/emotional piece), the year ended with her IEP being emptied of any services outside a social work consult if needed and she was elevated to Kindergarten.
Early in the Kindergarten school year, the District “team” had told us that at any time we could call a meeting to regroup on any issues we felt needed addressing and we did…plenty of them, but to no positive outcome. Emily received no formal special education services all year.
In late October of that year, just 7 weeks after starting Kindergarten, she was hospitalized for two weeks as an inpatient in a children’s psych ward after failing to thrive on a new course of drugs that included Depakote and Lithium after which she called out for help by telling a teacher she wanted to kill herself.
We were certain they would throw services at her when she was discharged, but, to our surprise and their neglect, they argued that nothing had changed educationally. They said the only way they would even acknowledge any change in her education was if the doctors who managed her care at the hospital would physically come to an IEP meeting to present their findings.
The doctors at the hospital were unable to attend any off-site meetings on Emily’s account, so I served as proxy, and presented 50 pages of documentation of her stay and her intolerance for educational overwhelm notwithstanding.
Despite my presentation of the findings, Emily remained in a classroom of more than 27 students with nary a special education service, despite her depression and hypomania. Needless to say, she spent a great deal of time in the nurses office complaining of bruises, stomach aches, headaches, colds, pains of mysterious origin, itching/rashes, etc.
If All Else Fails, Hire a Third Party Advocate
Feeling the failings of my own advocacy efforts for her, about ¾ of the way through the year I hired an outside professional Advocate on the suggestion of a friend. This Advocate spent hours explaining her credentials and her expertise in our specific school district. I was certain she would be able to advocate better for Emily than I could given my immature understanding of the whole “fair and appropriate education” verbiage.
This Advocate then set about to speak to Emily’s teacher and arranged a school visit to view her in the classroom setting. Emily’s kindergarten class had 1 teacher and 1 aide. It was an integrated classroom, so while there were others getting services such as OT, PT or Speech therapy, Emily wasn’t, though the teachers were pretty fluid throughout the day.
Her mid-winter report card had us quite concerned with her inability to “self start”, stay on task, complete tasks in a reasonable amount of time, have self confidence, and work and play independently (Things like erasing her work until there was a hole in the paper, destructive self talk and destroying artwork she wasn’t happy with didn’t seem to concern them) along with some abstract kindergarten level concepts she wasn’t grasping. Her reading and math skills were below the norm, as well, but not the point where it garnered any attention from the administrators.
The kindergarten teacher told the Advocate that Emily did struggle but that the aid in the classroom spent most if not all of her time supporting her. The Advocate found it pretty interesting that although Emily was polarizing the classroom aid, the administration would not admit that the aid was there specifically for Emily.
The typical ratio in Emily’s classroom was 1:12 children. On the day of the planned school visit, the Advocate arrived to a classroom of 24 children (a few were absent) and a teacher student ratio of 1:4. Yes, for the majority of the day that the teacher said would reflect a typical day in the classroom, there were 6 teachers in the room.
Even recognizing this was not at all a “typical day” the Advocate stayed and noted Emily’s morning. Of course, it went off without a hitch given that Emily was never left alone without a teacher’s direct support for even 5 minutes.
That whole year I had advocated that she needed a formal 1:1 resource to help her process what was being asked of her and provide support when she reached a level of frustration so she wouldn’t melt down, but they denied her this.
Aside from the $750 I wasted on the Advocate who could not, in good faith, say she saw any sign of Emily needing anything in addition to what she was already receiving in this “integrated” classroom, I had built up some serious anger.
The Advocate had one good point, as did our private behavioral therapist after this debacle, and it was that Emily did wonderfully with a 1:4 ratio. We played it for everything we could at our year-end meeting and thanked them for being so amenable to her needs and how excited we were that the ratio would be continued into 1st Grade. It would be carried over to first grade, right?
Unbeknownst to us at the time, the District’s elementary school had already suspected something was amiss and sent their own social worker and psych evaluator into the setting to watch Emily and on the day they sat in, there was a normal 1:12 ratio.
At year end and just prior to the final transition IEP meeting, I was riddled with anger. Craig and I began meeting with attorneys to assess our rights for a fair and appropriate education for our daughter in the school district.
Neither of the highly referred private attorneys thought too highly of our particular district’s handling of children like ours. They both prepared us for years of advocating and fighting for Emily’s rights. They looked at the IEP we had worked so hard to get for her with and told us it was the equivalent of starting from scratch in terms of building a case for a therapeutic outplacement of any kind.
I felt like such a failure. I had taken on a job I knew nothing about other than what my heart led me to fight for. I never realized that we didn’t just want an IEP, but we wanted ones with goals that were truly formidable. We wanted goals that would change with the evolution of a growing child with brain damage from alcohol and drug exposure. Most of the IEP was written for social and emotional support, and very little if none was written for measurable educational goals and objectives. I was polarized to getting her the emotional support because that had been what we had been slammed with at home. She was and remains a very smart little girl. To some degree we were working in the dark on what she would and wouldn’t be able to handle as it related to her educational skills and abilities.
What came of all this groping in the dark, was a weak IEP that wasn’t strong enough to earn us a formal 1:1 classroom support, never mind a state supported outplacement.
We were distraught and began looking at therapeutic schools in the area that we might be able to pay for privately. The two that were most in keeping with her social/emotional and educational needs were state refer only. In other words, they wouldn’t take our money if we gave it to them in golden nickels. They couldn’t. The only children who could attend these schools were those who had been outplaced or referred by local school districts.
Our next step was to assess private residential therapeutic schools across the country that might be able to provide Emily the structure and support she needed to be successful. They averaged 100-160K per year and as we began to evaluate our finances we realized they just weren’t financially feasible options.
The fact that as a dual income, white collar family, we could not afford to pay for an appropriate educational and residential setting for our child with social, emotional and educational challenges is a sign of a very broken system of support. If we were in a lower income setting, there would be services and funding, but for us, there was nothing.
Driven by the prospect of another school year fueling her unwieldy emotional outbursts, violent tantrums and inconsistent moodiness at home, I even went so far as to travel to a specialized school for kids with FASD in Washington.
This small, unaccredited school in a church basement has made huge inroads with FASD diagnosed kids by incorporating a strong Neuroreorganization “program” every 20 minutes during classtime. Faced with the reality of sending my 6 year old adopted daughter across the country to live with another family while she attended the school, I was left emotionally wracked so I tried to renew my hope and faith in our school district.
Next up, Emily’s transition meeting. Our district had its own team and school for Kindergarten/Early Childhood and Elementary School, so this was indeed a transition. Transition in schools, transition in teachers, transition of teams, everything and everyone except the Special Education representative would be different.
Having met with lawyers, we now knew that our previous IEP was poorly written because we never knew what to ask for, and as such we didn’t have high expectations.
To our surprise, the team from the Elementary School had seen warning lights with our Emily on the day they assessed her (we were not aware that they had even gone into the classroom to assess her). They acknowledged their concerns along with ours and dedicated themselves to being a team that would do more for her than any team before them, and to date, any team after them. We left surprisingly satisfied which was at the very least an opportunity to reduce the anxiety about the coming school year during the summer.
Look for the final part of this 3 part series in two weeks. To read the first part of this series, click here:
Author Bio: Lori Gertz makes her living as a strategic marketing consultant, writer, and reiki master and is currently studying to be a homeopath. She faced the ultimate Sophie’s choice—to give up the daughter she had adopted as a newborn or to keep her, even though she and her husband, Craig, could not ensure that their other
children would be emotionally and physically safe if their troubled sister remained in the family home. She is writing her book, Mama Can’t Kiss It Better: An Idealized Motherhood Lost.
She has created a resource for parents struggling with many of the same issues on