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This story is part of Amplify Oakland, our series of first-person stories shared by Oaklanders in their own words.
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Amplify Oakland is supported by a grant from Akonadi Foundation.
The first time I heard the words “transition plan,” I was navigating the halls of a local community college at something called a Transition Fair. When a friend had first shown me the event flier, I had no idea such things existed. It mentioned panels on IEP advocacy (IEPs are federally mandated, individual education plans for public school students with special needs), applying for SSI, and programs on independent living skills, three things that piqued my interest. My son, Cosmo, was a 10th grader at the time, receiving special education services in Oakland Unified School District, and I was happy to find more information on how best to support him.
Cosmo has had multiple diagnoses over the years. Most have been medical rather than psychological, but a number have impacted his intellectual, social, and emotional development. Cosmo qualified for OUSD services when he was three years old (as a preschooler he was enrolled in OUSD’s Programs for Exceptional Children, now more commonly called the Special Education Department), and by the time I was making my way around the Transition Fair, he’d been receiving services from OUSD for over a decade. He’s received home and hospital instruction, speech therapy, physical therapy, occupational therapy, adaptive PE, and modifications on school assignments. In middle school he was given an FM system—a wireless audio device—in every classroom to help with his diminished hearing. He’s had academic, psychological, and physical evaluations every three years. Once, to help with his fourth-grade standardized testing (for which he was allowed unlimited time), his special education teacher jerry-rigged a computer mouse to jiggle every 10 minutes over the course of several days so that he wouldn’t be locked out of the computer program between testing sessions.
For my own part, I’ve cajoled and begged teachers, wept in front of administrators, and even filed a complaint with the Office of Civil Rights in response to what I felt was OUSD’s mishandling of a mediation to resolve a dispute over resources that Cosmo—who has difficulty listening to lectures and taking notes at the same time—needed to succeed in the classroom. My determination to advocate on behalf of my son hasn’t always been well received. Once, my husband and I were ordered to a principal’s office to be upbraided and indelicately told that we might find another school more to our liking. When I asked the principal what he would do as a parent with a student facing circumstances similar to Cosmo’s, he stared at me blankly, then hurriedly ended the meeting. On another occasion, I was told I could not contact one of my son’s teachers directly “because of the union.”
I mention all this to demonstrate that I was hardly a novice when it came to advocating for my son. And yet, there I was, at a resource fair for students with special needs, having never heard most of what was being discussed in relation to “transition.” There was a seminar on transition planning, and another on transition opportunities. There were transition services, transition programs, and post-transition employment opportunities. When I explained to one speaker that my son was only in 10th grade, she looked at me intently and said, “You must begin planning for transition now!”
That was over two years ago, and now lo and behold, transition is upon us.
Transition, I discovered, is an all-encompassing word used to describe that period at the end of high school for students with special needs who have an IEP or 504 plan, which guarantees services and accommodations for students with disabilities. I am not an expert on special education, and my understanding is limited to what I’ve learned over the course of my own child’s journey. But I do know that for many parents and guardians of students in special education, navigating their child’s path to a high school diploma can become extremely contentious, stressful, and ultimately heartbreaking. Cosmo will graduate with a diploma as a 12th grader this spring, but many students with an IEP or a 504 plan won’t. Some will receive a certificate of completion instead, and others will remain enrolled in OUSD until they are 22, in the district’s Young Adult Program, which provides academic and life skills classes for moderate to severely disabled students.
Resource links for families and students with special needs in Oakland
Armed with the intelligence that we needed to start transition planning right away, but not entirely sure what we were asking for, my husband and I began requesting such a plan during our son’s IEP meetings. Cosmo’s special education teacher obliged, and asked us what options he might have after high school. We had very little idea, and it wasn’t that clear how OUSD could assist us in figuring it out. Cosmo regularly peppers his conversation with five syllable words and is my go-to household handy person when it comes to building Ikea furniture, but he has trouble safely crossing busy streets. He loves coding and programming (he’s a Python enthusiast), but has a brain processing speed in the fourth percentile. What exactly are we going to transition him towards? Who, we wondered, could help Cosmo figure out his next steps?
‘Grinning ear to ear’: a diagnosis unlocks services
When my son was a baby, he’d qualified for services through the Regional Center of the East Bay, one of 21 non-profit regional centers across California that contract with the state to provide services for persons with developmental disabilities and their families. (We were lucky to connect with the RCEB when we did; if your child does not exhibit signs of delays, or you don’t know how to recognize them, it can be easy to miss the window for RCEB’s early childhood services, and kids can enter Kindergarten with intellectual or developmental challenges having never received any early intervention.) I no longer recall how I learned about the center, but I do remember that accessing its Early Start program for children 0-3 years old was relatively uncomplicated. Cosmo was 12 months old, and I’d just moved back to California from Washington DC. I knew by then that my son was delayed in reaching developmental milestones, and I was looking for help. Cosmo was quickly assessed and referred for services, and soon the center was arranging for physical therapists, occupational therapists, and speech therapists to come to our home on a regular basis and work with him.
But when Cosmo turned three, he aged out of the Early Start program, and we were told that he no longer qualified for RCEB services since he’d never technically been diagnosed with a developmental disability. And so just like that, services ended. One door was closed, I’d thought, but OUSD’s door was open, and so my son entered the district’s pre-K program for children with speech and other delays.
Cosmo is sweet, curious, and funny. He does well in school with extra supports, and is generally liked, but has few friends. He has some mild tics, verbal and physical. He finds social situations tricky to negotiate, and will tell you he does not always understand what he is doing wrong. He is very trusting and can miss the signs that someone is acting unkindly. To best meet his needs, OUSD placed him in a program designed for high functioning students on the autism spectrum, even though he’d never been diagnosed. Cosmo had been periodically evaluated by neuropsychologists at Children’s Hospital Oakland, but amidst the many studies of his symptoms and behavior, there was never a suggestion that he should be evaluated for autism. The truth was that we thought it did not really matter. He had assets and deficits, and he was being supported at school for those assets and deficits.
It was an expert in child development who’d advised us years earlier on appropriate school settings for Cosmo, who suggested that we consider applying to the RCEB again, as she thought there was a possibility that he would meet the criteria for an autism spectrum disorder diagnosis. We had not really understood the range of clients served by the regional center and had mistakenly believed that Cosmo’s IQ was too high to meet its criteria for an intellectual disability. So I thought, why not? The RCEB website touted much-needed support services, and could help Cosmo with things like independent living skills training, travel training, job training, applying to colleges and securing needed accommodations, and could even help him to find affordable housing.
We applied for RCEB services for the second time when Cosmo was 15 years old. The application included paperwork, submission of Cosmo’s IEPs, past neurological evaluations, and several interviews. My husband and I went together to Cosmo’s final interview. Afterward, we were asked to speak with the doctor and psychologist who had conducted the evaluation. We entered the room, and all sat there quietly for a moment. The doctor looked perplexed. He asked, why had we not sought an evaluation earlier? We seemed like we were engaged advocates, so how had our son’s autism spectrum disorder been overlooked for so long? Cosmo qualified for RCEB services.
I can only imagine that for most parents, hearing that your child is on the autism spectrum is a difficult moment. But for us, after 14 years of dealing with far scarier medical diagnoses with Cosmo, the news came as a relief. My husband and I left the RCEB offices grinning from ear-to-ear. Most of the services Cosmo could use would kick in after he finished high school. We had a couple of years to sort out next steps.
Like most other seniors this year in Oakland, Cosmo’s last year of high school shrank down to the four corners of his Zoom screen. In a strange twist of fate, the pandemic made neurotypical students’ worlds a lot more like Cosmo’s—months stretching into a year of hanging out at home with only family. Socially and emotionally, Cosmo had over a decade to prepare for social distancing and he has managed it well. Planning his transition, however, has been more difficult. Even with the comfort of knowing Cosmo will receive certain services through the RCEB, my head is swirling with questions. Where can he find a post-high school academic program that will accommodate his unique strengths and weaknesses? What jobs can he be successful at? Who can help him, and us, figure this out?
It turns out that OUSD has transition counselors for students with IEPs. Ours, a kind woman, helped Cosmo with paperwork so that he could access services from the California Department of Rehabilitation (not to be confused with the Department of Corrections and Rehabilitation), the state agency that helps people with disabilities find employment. The DOR could be another helpful resource after Cosmo finishes high school, she told us.
About a month ago, we had a Zoom meeting with a DOR representative and the transition counselor. We learned that there were jobs in hotels, homes for the aged, filing jobs at the county clerk’s office, and other positions that Cosmo could apply for. I explained about our son’s difficulty crossing streets, and that he may need travel and independent living skills training. The DOR representative said that once Cosmo had a job, DOR could find a vendor to teach him how to take public transportation. The DOR could probably help with travel training, too. It depended on what we decided for Cosmo’s transition, said the representative. We would see.
‘Maybe we can lessen the obstacles for others’
A friend recently sent me a text saying that her daughter got into her first choice of colleges and was elated. I have an older son in college, but nevertheless I felt a momentary pang of jealousy. She knows what is next for her daughter who, like Cosmo, is about to graduate high school. But the more I thought about it, I realized that while some very big and important decisions had been made and problems solved, my friend is still facing all the worries and yearnings of every parent or guardian. Like my friend, I fervently hope Cosmo continues his education in some form, and that one day he will find employment that gives him dignity and independence, that he will make loyal friends, that he will have good health (and access to adequate health care), and above all else that he will be happy. And, if I am honest, I believe my son’s completion of high school is more extraordinary than her daughter’s. My son overcame hurdle after hurdle. He climbed mountains and forded rivers to reach this point.
I am sharing a little of Cosmo’s story because I am certain that his experiences, and my own as his parent, are not unique. For every parent or guardian that has been outspoken in their advocacy, stood firm in school meetings, organized others to support OUSD’s special education, and pridefully shared how their students’ conquered challenges, I worry about those who are reluctant to talk about their students’ special needs or who haven’t had the benefit of learning from others. If we parents and guardians can figure out how to share our knowledge more often, in more ways, with more people, maybe we can lessen the obstacles for others in the future.
As this senior year comes to a close, I want to draw attention to parents and guardians of students with disabilities and learning differences, who repeatedly knocked on closed doors and pushed through side entrances to mobilize special education teams, access resources, implement accommodations, and wade through the murky waters of transition planning. And most especially I want to recognize those parents and guardians with inflexible jobs for whom attending a school meeting means a lost workday, or for whom English is a second language, or who have taken on the care of a foster child and do not have the most accurate record of their student’s developmental or academic history. We are rarely the popular parents and our kids have won fewer traditional awards or accolades. On some of us, the strain of parenting a child with special needs has rubbed itself into a chip on the shoulder. For others, it has greatly depleted finances and ended marriages. I do not know anyone for whom it has been trouble-free. So, to all of us parents and guardians with bad eating habits, high blood pressure, and countless nights of lost sleep, I raise my glass to honor us and our kids. Who knows what the future may bring.