My Story Isn’t Your Story, Your Story Isn’t Mine
“Before the IDEA, children like my son were stigmatized, stereotyped, and institutionalized.” Senator Maggie Hassan
Oh what deep grief, abundance of lessons, and remarkable joys come with pain and struggle. What is life if we cannot allow our story to become part of the greater story of helping each other place one foot in front of the other?
Senator Hassan has passion, conviction, and pain- if you have been in the special education ebbs and flows of the past 40-50 years, like my family has, you find yourself talking to the tv, shouting “Amen! Preach it!”
I am not bringing this to your attention today for any political reasons. To be completely honest, I couldn’t even bring myself to watch the hearing on how the transfer of IDEA, aka special education, was being given to HHS secretary RFK, Jr. and DOJ Attorney General Todd Blanche. I already tremble at the very thought of the chaotic disabling of many experts in many different departments, that the mere fact of watching this hearing made me sick.
So, onto what I will bring to your attention today: the history of Special Education/Education for All and also what the current IDEA is and you can come up with your opinion about who should be handling this part of oversight.
1975: Education for All Handicapped Children Act (EHA) set in place to support states to protect the rights and offer the individual needs to children – age 3 to 21 – with disabilities and their families.
1986: Revised to add early intervention, and to provide services for children born with disabilities from the moment they are born.
1990: EHA became IDEA, Individuals with Disabilities Education Act. Traumatic Brain Injury and autism were added as new disability categories. Individualized Education Program (IEP), an Individual Transition Plan (ITP) were introduced and mandated for each child.
1997: Revised to include access to the general curriculum. States were granted the authority to define “developmental delay” for students up to the age of 9. This law also made sure parents were given what they needed to resolve disputes with schools and local educational agencies, by way of mediation and given the process to do so. Early intervention and preschool programs were introduced to prepare children for what lie ahead – in school and life.
1980s and 1990s: quote from sites.ed.gov: “The 1980s and 1990s saw a push to expand the opportunities for educating children with disabilities in the least restrictive environment.” This push led to children being able to attend their local schools and learn life skills, in which they now could use to be a helpful and active family member and participating citizen. *Their dignity and humanity was seen. Just my thought*
1983, 1990, 1997, and 2017 amendments: Have all enhanced the support the preparation of vocational transition programs – which lays out a plan in their IEP for their transition from school to post school plans. This helps with identifying fitting jobs, living prospects, referrals to community agencies, connecting students and families to resources in the community-example: job placement.
2004: IDEA with the No Child Left Behind Act: early intervention for children not currently identified as special education, but in need of academic and behavioral support. More accountability for improved educational outcomes and Higher standards placed on special education teachers.
2006: Implementation of “research based interventions” for the process of assisting students with learning difficulties and determining the eligibility. A resolution process became a requirement for a parent who files due process complaint. The responsibility to provide equal services for children with disabilities placed in private school was now given to the local educational agency (LEA) where the private school was located.
IDEA and what it is: IDEA has Part B, Part C, and Part D.
Part B is ages 3-21, this provides the legal requirements and funding for children to get the support they need in school.
Part C is ages 0-2, this provides the services and funding for infants and toddlers.
Part D is the national activities. It provides funding for grants to support state personnel development, tech assistance, info dissemination, technology, and information and support for parents.
Why does this matter? There are approximately 2.48 million students receiving services under IDEA- 34% of the total of students (7.2 million). IDEA oversees the federal funding that assist states in providing individualized education plans.
I will link all this information at the bottom – if you want to read more.
My family’s story lands in the 1980s to the 2006 phases. Now, my mom wouldn’t like the recognition, but if I could take you back to the 90s, and place you in our home office, it was truly a sight to behold. The wall was lined with file cabinets- of course, there were some for bills and other such documents, but then there were drawers of medical documents and school documents for my brother and I. I actually still have the majority of mine, because there is a sense of deep love, care, and long-suffering along with hope. These pages are filled with heartbreak, hardship, unknowns, answers, solutions, no cures, but plans to manage health.
I have had two realizations this past week, similar ones happen often. They both were moments of reminding myself and the people I was talking to, that my story isn’t your story and your story isn’t mine. The first was a video doctor’s appointment. He was asking about how the weather and heat were effecting my migraines and asthma. To which I said, “Summer is always difficult. It hasn’t been easy, that’s for sure. But I am pushing through.” He responded with this question, “Does the heat limit you in any way from getting outside?” I paused, I can’t ever remember anyone other than my pulmonologist and family ever asking me this question. I responded, “Yes, I have found comfort inside since I was little. That’s nothing new for me. I have always had to pay attention to temperature, air quality, and humidity. And there are days that are just too risky.” The second, my mom, dad and I were reminiscing about my Paw-Paw who water skied long after his doctors knew he was! I don’t really remember my parents skiing, but I do remember him skiing- if that’s says anything. But they were telling stories about their camping days with him and my grandma- before us kids came along, and we were laughing because he was a “all or nothing” adventurer. And I absolutely love hearing these stories and seeing pictures. But then it hit me, Paw-Paw slowed down for me. I knew his “all or nothing” spirit, but when I was with him and the doctors were saying she needs to stay inside – he stayed with me. The person who could ski all day, boat all day, tan all day, stayed with me and made sure I got my nebulizer treatments, and I never felt like I was hindering his spirit.
I share this because it’s a small glimpse of what it looks and feels like to be seen, even when you don’t know you need to be seen. It’s an advocacy that is simple and sometimes quiet, but it sends ripples without anyone knowing it. Both simple and detailed, both quiet and outspoken advocacy is needed. I don’t agree with all of the IDEA plan, and the No Child Left Behind gets under my skin. But the parts that work, need to continue to work. I have a hard time with people who cannot say they were wrong or place blame on mothers, medicine, or proven vaccines for the mental health of children and adults with the very real diagnosis of autism, taking over the decisions of the services and funding of this very important part of our education system.
My brother and I were able to go to private schools and programs that allowed us to have plans adapted in ways that worked for us. Public schools were not feasible for either of us. That doesn’t mean that I don’t care about these much needed services. Early intervention is amazing. Head Start cannot be taken away. With the HHS and DOJ entering into the Department of Education is only putting more federal government into our state rights and regulations.
That’s my thoughts. Don’t get me started on the CDC and FDA…
Life book of the Week: A.D.D. not B.A.D., by Audrey Penn
