Today I wanted to share our experiences with navigating Special Education in our public school system in hopes to help others with what questions to ask the school and things to consider when filling out paperwork.
Back in October, Jackson phased out of First Steps and rolled into the public school system. Based on his IEP, he qualified for services 4 days a week, so he was enrolled under those minutes and began his journey in the public school system Tuesday-Friday. On Mondays and the second half of Tuesdays – Fridays, we had arranged for Jackson to attend a second school. Around December, emails from the school district started coming out about the next school year enrollment and it was our hope that we could get Jackson in 5 full day preschool at the same location to ensure he would retain the same bonds he made with all of his peers, teachers and therapists. The school sent home paperwork that stated, “Children on an IEP are automatically enrolled in the next school year.” In reading that statement, it made us think we would not have any issues with Jackson staying where he was. I made mention to his teacher we wanted to look at 5 full days and she said we could discuss at his IEP meeting in March…keep in mind that enrollment began in January.
As March approached and more emails/calls had been exchanged it was apparently clear that we needed to enroll Jackson in the 5 full day, tuition based program, which at this point had been open to families outside of our school district for 2 months. We were placed on a waiting list…12th in line to be exact. We sent an email to the Superintendent and also the person in charge of Special Education explaining everything that had happened…how the letters from the school read one way, how the IEP meeting should be held prior to a big event, such as enrollment, how when we phased out of First Steps into the school system we were never informed of all the options we had available, including tuition based programming and asked if there was anyway we could keep Jackson at his current school. The answer was a resounding, “No!” If Jackson were to stay at his school, then another child would lose their spot. What I heard was he couldn’t bump a typical developing child from their spot, because all the options are clearly presented to those children. What I heard was my child doesn’t matter and having an intellectual disability where we struggle with anxiety, change, trust, speech and everything else would adapt at a new school. What I heard was that my child didn’t matter and children outside of our school district took priority over our son. When the man in charge of Special Education, who is also in charge of the Gifted Program (two different ends of the spectrum) told me it is usually the parents that struggle with the change and these kids are resilient, it took everything out of me not to jump through that phone. I said clearly we will not reach any type of understanding or agreement here. I thanked him for his time and hung up. I sat in the driveway with tears streaming down my face and also the rage of a thousand fires burning inside of me. You do not know my child, you do not know his struggles, most people don’t know what Fragile X Syndrome is, so do not pretend to know how he will handle this change.
So, we reached out to another Early Childhood Center in the district and found Jackson a full time spot. It wasn’t ideal to switch schools, but we had to do something to ensure he had a school to go to. During this whole ordeal to secure him a full time spot, we were also told he would need his own para. We were instructed to reach out to the Developmental Disabilities Resource Board (DDRB) and start the process to have Jackson assessed and approved into their system. After a month or so of calls/emails, Jackson was assessed and qualified to get his very own para to be with him everyday at school. Jackson has now been at his new school 1 full week and things are going great. He is loving his para and he has a smile on his face every day at drop off and pick-up, which is all we can ask for. We are hopeful that the Fall school year will be just as successful as he will start up his therapy sessions again and we cannot wait to watch him grow and learn with some new friends, teachers and therapists.
Based on the things we have encountered as we entered the public school system, I wanted to share a list of questions in hopes we can help you with your transition when the time comes:
- Upon your child phasing out of your states Early Intervention Program such as First Steps, ask them if they need to be sending any information (referral/recommendation/etc.) over to the DDRB
- This piece was missed on Jackson’s transition, which is why it took so long to get him assessed and approved.
- At your first school meeting (Enrollment, IEP, Tour, etc.) ask about all options for schooling, not just Special Education based on IEP minutes.
- Full days; tuition based
- Summer Programs
- Snow Daycare (if offered)
- Extended Year Services
- Ask if they have any Special Education Program documentation
- Ask for a clear payment schedule for each program
- Each program our district offers has a different payment schedule (frequency, day of the week, length of time to pay over)
- As a parent of a special needs child you have the right to call an IEP meeting anytime you want. The district must honor your request.
- You need to give them 30 days notice, but they cannot deny your request
- Set the expectation that you want regularly scheduled IEP meetings, if you want that (Monthly, every other Month, whatever frequency you would like set that expectation up front, so the school knows what to expect from you)
Upon joining the Board of Directors with the Fragile X Resource Center of Missouri, I have made some wonderful friends and I actually learned the other day that there is a great group of parents that are experts in navigating the public school system and IEPs, so if I ever need assistance with navigating the school district I have a group ready to jump in and join our IEP calls. Perhaps you have a local group that can assist you with these conversations and if you are not sure, I encourage you to reach out to the Fragile X Resource Center of Missouri and we will work to help connect you with someone local.
XOXO
Our Fragile Xperience 