kindergarten

 Lexi's first day of Kindergarten

 Snuggling with brothers after she got home. They missed her!

 Dressing up at school for Halloween

I knew from other parents that the transition to "real" school is often another time of grieving for families who have kids with disabilities. It was definitely a stressful time that required a lot of preparation. Lexi would be going to school for a couple hours 5 days a week. She had to leave the security of people who had known her since birth and move to a new classroom with new people where she was the youngest. This meant I had to train everyone in how to care for her. I had to trust them to read her cues and body language and not push her beyond her limits. It required a lot of faith. With her early intervention therapists a relationship was built before we left Lexi with them. We didn't know one person in her kindergarten program.

The severity of Lexi's disability left us with really one option for school and that was the LEEP program. It was an isolated classroom with other disabled kids. Most of the other kids could not speak and almost all of them had some form of autism and were very busy. The classroom itself was designed in a way that was geared towards autistic kids. There were lots of separate cubicles with not much distractions on the walls. It didn't look anything like the colorful open classroom setting she came from.

Since Lexi is so social I wanted her to spend some time in a regular Kindergarten class as well as the LEEP class that we were offered. This was met with much resistance from the school district at her IEP meeting. When you have a child with special needs you have a yearly meeting for school where they pick apart every thing your child can and can't do and make decisions for them. Once something is in their IEP or individualized education plan the school legally has to provide those services.

It costs a lot of money to educate children with special needs and that money comes from different places. Once Lexi spends time in a regular class that can change how her education is paid for. It wasn't personal at all. But the school district representative who showed up late barely glanced at the paperwork. He had never met Lexi but was the decision maker. He was rude and I left the meeting in tears. I had to fight for it but I did accomplish what I set out to do. Lexi would spend an hour each day in the regular classroom.

The first day of school I walked with Lexi and her aide to the regular kindergarten class. All the parents were smiling, taking pictures and celebrating this big milestone in their children's lives. My stomach hurt. I felt so separate from those other families. Everything about our reality felt wrong.

In the privacy of our own home our situation had become normal for us. I didn't think about what everyone else was doing with their five year olds. But seeing all those typically developing kids the same age as Lexi with their happy families was a shock to the system. While other families were buying backpacks and school supplies I was making several trips to the school nurse and classroom teaching people about Lexi's needs. While other parents left the first day after a few minutes I stayed to share with the kindergartners about Cerebral Palsy and introduce Lexi.

The kids were adorable and had a lot of questions. They accepted Lexi right away. It was beautiful and heartbreaking at the same time. I remember thinking it would have been easier on me to just have her in the LEEP class because I felt comfortable there with those kids and parents. That's where we fit.

All the people working in the special needs class were AMAZING! They had such huge hearts and I could tell that Lexi was loved there. She was the only girl in the class and spoiled. Lexi loved school. They worked with her on making choices through eye gaze as well as using switches or buttons to make choices. She got physical, occupational and speech therapy at school. All of her improvements were slight but I felt encouraged and hopeful that Lexi would continue to make progress on her goals.

By the end of the year I realized it wasn't worth the effort to have Lexi be a part of the mainstream in public school. The regular Kindergarten teacher had 35 healthy kids in her class. She was overwhelmed and didn't have the time or energy to figure out ways to include Lexi. There was no communication from her and inclusion in field trips, parties, or anything that Lexi could have happily been a part of. The only good thing that came from Lexi being in class was that a few girls had befriended her. They would stay with her and her aide at recess and blow bubbles for her, push her wheelchair or read to her. One girl specifically made a connection with Lexi and it was a blessing for me to see Lexi's joy in having a friend. Even so, I never fought to have Lexi in a regular class again.