Updated: Aug 3, 2023
I’ve been working in early childhood education since the year 2001. I was a junior in high school when I got my first job as an assistant teacher in the toddler classroom at a local daycare. By my senior year, I was overnight babysitting for families of kids at the daycare and excelled in the class I was taking called Careers in Education. I ended up winning an award I did so well! I was already fascinated with children because of my firstborn nephew, Zach. I became an auntie at the young age of 12! My older sister was a teen mom at age 16. My sister and Zach lived with our family for many years. We all helped out with the responsibilities of raising a baby; my mom and dad, older brother and youngest sister and I each took turns caring for him. I learned so much and I loved it! I knew then, at 12 years old, that I wanted to make a career out of this – So I did!! Straight after high school I got a full time job and started night school college courses for Early Childhood Education and Management. I finished that in 2004 and have since worked as a mothers helper, a babysitter, a teachers assistant, a co-teacher, lead teacher of all ages 0-5 years, an assistant program director, a manager for an indoor play space, a career nanny and the most lived experience of them all – a proud mama of two beautiful girls, one who was born with a disability. I’ve worn a lot of hats but, It wasn’t until we discovered Chrissa’s diagnosis of optic nerve hypoplasia that I started to learn more about children with disabilities. I knew about physical disabilities but nothing about learning disabilities/challenges. I wanted to learn more about them – ALL of them not just ONH. I still felt shocked by our rare diagnosis. I had to take a few years to find doctors and resources and to grieve what I thought motherhood was going to be like for me. I do feel like I mourned the loss of my daughters vision, there is no cure for ONH. We were told worst case scenario only – Chrissa wouldn’t thrive, she would be severely developmentally disabled, they kept putting limits on her! She wouldn’t sit up or spoon feed herself. I never imagined that I would be faced with this. The struggle of it all and the unknown that lays ahead…I couldn’t help but wonder how it would affect our daily lives. Never ever a burden, a lifestyle adjustment. We will adapt. We can do this!!! I started doing my own research while we were getting Early Intervention services (birth to 3). The family and parent portions of EI are extremely beneficial. I learned a lot from our awesome therapists and the teachers at the developmental preschool Chrissa attended when she turned 3. It was time for our IFSP (individual family service plan) transition meeting to kindergarten (this is when your service plan with EI ends and switches to an IEP (individualized education plan) within your local school district). I thought the team representing Chrissa had her best intentions in mind. They had always been supportive, kind, eager to learn about ONH I genuinely believed they wanted to set us up for success. But when the time came they had little interest in explaining anything to me and I felt completely blindsided. I know they want what’s best in their hearts for every student but financial hardships are real in special education. There isn’t always support or funding and I’m finding it varies state by state, school district by school district. It still blows my mind! So many inconsistencies! Anyway, I was devastated and felt massive parent guilt and regret that I didn’t learn my parental rights before agreeing to the new terms of her IEP. The school insisted we could place Chrissa in general education with vision services only. They said she had grown exponentially and data reflected that she no longer needed OT, PT, or a para educator to assist her with daily tasks and activities. I was proud of my kid! Don’t get me wrong, what I was hearing was exactly what I had hoped and prayed for – my baby was going to General Education with her sighted peers and only requires vision therapy and speech therapy! Boy was I wrong! That ended up not being true for her and we got pushed around quite a bit that first year in public school. The teachers reported many behavioral concerns and even had her sent to the principal for disciplinary action. Chrissa had always been calm, well mannered, cooperative, kind and a bit shy. Now, my visually impaired 5-6 year old was constantly in trouble at school. I knew something wasn’t right and I was going to get to the bottom of it! That’s when I enrolled in a program with my local disability agency, The Arc of King County, here in WA. Their leadership program is called IEP Parent Partner Training. The Arc helped me achieve exactly what I set out to do – learn my rights as a parent of a student with a disability in public school. First thing to learn was FAPE, Free Appropriate Public Education. What does this mean? I’ll go into more depth on each of these throughout my blogs. We covered The IDEA Act, “The Individuals with Disabilities Education Act (IDEA) is a law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children. The IDEA governs how states and public agencies provide early intervention, special education, and related services to more than 7.5 million (as of school year 2020-21) eligible infants, toddlers, children, and youth with disabilities. Infants and toddlers, birth through age 2, with disabilities and their families receive early intervention services under IDEA Part C. Children and youth ages 3 through 21 receive special education and related services under IDEA Part B.”* There are 13 categories listed under IDEA that are qualifying diagnoses, Visual Impairment is number 13. And finally, that small booklet full of teeny tiny print that the schools/EI Agencies offer you during each meeting – The Special Education Rights and procedural safeguards pamphlet. There sure is a lot to know! Don’t feel overwhelmed though – ONH Awareness is here now!! I didn’t have this life line when Chrissa was little but I sure am happy to share my experiences and provide some guidance with you all so that you know, you aren’t alone!After I became a certified IEP Parent Partner I felt confident enough to start volunteering my time helping others who needed support during their own meetings. I was doing pretty darn good advocating for C and I love volunteering and reviewing IEP documents. If you haven’t yet attended an IEP meeting, you’ll learn real quickly that it can be a time consuming and often unclear experience. Especially if you have no background or knowledge about children with visual impairments/disabilities and you aren’t familiar with your parental rights under a law that protects your student! I left a meeting once feeling so confused I broke down in tears in the parking lot. I couldn’t even leave school property before the emotions burst out of me and I immediately felt defeated. Alone. Cleary, I bounced back and decided to fight the good fight for special education! This is why I became an advocate. It was the best thing for Chrissa and for me. I believe that knowledge is power and even if you don’t want to go on to help others, you’ll be doing yourself a huge favor if you take some kind of IEP crash course. Learn your rights and advocate for FAPE.
An IEP meeting includes you/Spouse, anyone you choose to invite as a support person, 3-6 teachers, therapists, the principal, school psychologist, and a district representative. You can invite a school counselor but they aren’t legally required to attend. It can be rather intimidating when the team tells you about your child. Your child’s strengths and weaknesses. Yes, we know each child will learn at their own pace and in good time but what we need is for teachers and school staff to partner with us while we learn about SDI (specially designed instruction main component of the IEP) and how our students learn best. Some school districts seem to be 100% on top of sped services while others are downright failing our visually impaired and disabled students. It’s Almost as if the school team is overpowering but doing it nicely so it doesn’t seem like they are doing anything wrong. I know I’ve felt a little displaced and outnumbered during these meetings, which can sometimes occupy up to two hours of time! And you know what is most upsetting?! Not one team member ever informed when we entered the public school system that I too, was a member of the IEP team. Please know that we as parents and guardians are the most important members of the students IEP team. Why? We know our children best! And until our kids want to start attending their own IEP meetings, we must be their voices. Start where you are. Take it all in. Use what you have and learn as you go. Enjoy the milestones as they come, they will. Don’t worry too much about the future right now Instead really live for each day with your child. They are going to teach you so much! It goes by so quickly! Fast forward to February 2023- Chrissa is a 7th grader, I’m the VP of this much needed nonprofit organization and honored to serve as a Board Certificated Advocate in Special Education through The Academy of Special Education and the National Association of Special Education Teachers. Thanks for being here and reading this! I can’t wait to share more with y’all soon. Peace, Love and ONH Awareness, Joanna Source sited: sites.ed.gov