As parents, we want what’s best for our children. As parents of children with disabilities, we also want the least restrictive educational setting — in other words, we want our children to be included with their general education peers as much as possible. My goal as a parent has always been to be my 4-year-old son Julian’s voice. Our special education journey is just beginning, but honestly, it already feels like it’s been a long one.
I thought I was ahead of the game. I had Julian’s special education evaluations and Individualized Education Program (IEP) meeting done early, I toured about five schools, and had my pick from about four of them. I wanted him to be placed in an ICT (integrated co-teaching) classroom with the assistance of a para. After speaking to the CPSE (Committee on Preschool Education) admin, I was told that what I wanted was impossible, and that we should start looking at a smaller setting.
Originally, we decided on a classroom of 12:1:2 (12 students with IEPs, one special education teacher and two assistants). I didn’t mind this classroom placement. Ideally, I wanted a classroom of 12 where Julian would fall in the middle developmentally so that he could model off his “higher-functioning” peers. I ended up chosing a classroom of 9:1:3 that used ABA (Applied Behavioral Analysis) methodologies.
Just to give you a little backstory, Julian started receiving services through Early Intervention (EI) at age 18 months, and I attribute most of the progress he has made to ABA therapy and the wonderful woman who we both worked with. Because of ABA therapy Julian became verbal, able to communicate most of his needs, and now has an amazing imagination. It was because of this that I chose to go with this placement despite it being a smaller, more restrictive setting than I had hoped.
Julian consistently shows me new things that he has learned every day, and asks the letters that words start with. He is extremely interested in learning and making connections. I imagined that when I received his first report from school that it would reflect immense progress. Much to my surprise, when I received his first report, Julian was rated from 11-22 months in the various domains of development.
I felt sick to my stomach. How could this be possible when I was seeing so much progress? I compared this report to his original evaluation for preschool and one of his last reports from his ABA therapist from EI, and each report in comparison showed regression.
I spoke to three of INCLUDEnyc’s family educators about my concerns, and also to someone at the Early Childhood Direction Center (ECDC). I did not agree with this report and was convinced that this was the wrong setting for Julian and that it was too restrictive. After conversations with his school I had learned that Julian was actually one of the highest functioning children in the classroom, that he did not have opportunities to learn and imitate from peers, and thinking back to various meltdowns that we had been experiencing, he was in fact picking up some negative behaviors.
I was urged to speak to the CPSE Admin and the school in order to share my concerns. I provided them each with copies of the reports I was using to compare progress, and discussed all of the things the school’s report said he couldn’t do that I knew he was doing at home. I was met with kindness from the CPSE Admin and the school stuck to their findings in the report (stating that due to behaviors he was not progressing; but no examples were actually given to me). I was very honest in speaking to the Admin and informed her that I felt his placement needed to be changed ASAP. I told her that I would be reaching out to schools to see if they had placements. She encouraged me to do so, but warned me that in January placements were scarce.
I again spoke to the educators at INCLUDEnyc and the ECDC for guidance. The ECDC was kind enough to give me some referrals to schools that they felt might be a good fit for Julian. The educators encouraged me to reach out to Julian’s ABA therapist from EI and ask for some recommendations. I called and called different places and no one had any space.
While all of this was going on, it was also time for our annual IEP meeting. Only minor changes needed to be made to Julian’s IEP; the only big chance I had in mind was for his placement. I agreed to have his IEP meeting before a new placement could be found with a promise from the Admin that a reconvene could take place upon finding a placement. At the meeting, we talked about all of Julian’s progress (again, no examples of behaviors were given) and his teacher agreed that his placement was not the best for him.
I was honest with her and told her that I was looking for placement elsewhere and that what I felt he needed was an ICT setting where he would have a chance to learn and imitate from his peers (oddly enough, but not surprisingly, I was back to what I originally wanted). At the IEP meeting we added movement breaks for Julian and I was given an opportunity to observe him in the classroom. He looked happy, but I noticed that the number of adults matched the number of children (this was not the least restrictive setting for him).
Julian’s ABA therapist from EI was able to give me two recommendations for schools: one seat was already filled, and the other had one seat left. I went on a tour with Julian, discussed my concerns, and he was able to join the classroom for about half hour. They felt that they would be able to work with Julian and that it would be a great setting for him. This classroom was a 12:1:2, but the beauty of it was that it’s also an ICT classroom where there are six children with IEPs, and six typically developing children. They offered the seat to Julian on the condition that he be given a para to help him transition. I accepted this seat and as per the advice of the educators at INCLUDEnyc, wrote a letter to my CPSE Admin requesting a change in placement, and I stated that I had found another placement and would like his school to be changed.
We had a reconvene meeting about two weeks ago, and I was able to get Julian into an ICT placement with a para. He is going to start his new school on Monday and I am optimistic that he will do well and show everyone how much he can progress in a proper placement.
I share this to encourage parents to trust their instincts, as we know our children best. Call the experts at INCLUDEnyc and get the information you need to advocate for your child. Nothing is set in stone, and sometimes what we originally think is best may not be, and that’s ok. We as parents are our children’s best advocates. We are their voice.