School, but My Child is Only 3?!

Many of us come home from the NICU and enter a whole new world. We have countless doctor appointments, monitors, and medications. A lot of us also are introduced to a form of Early Intervention services for our child. In Texas these services are call ECI, but each state has its own abbreviation. Early Intervention services are often done in your home or your child’s day care. Depending on your child’s needs they may see one to MANY specialists in the Early Intervention program. Specialists are generally therapists, but also include social workers, developmental guides, etc.

Services from Birth to Age 3

My daughter received therapy services in our home shortly after getting home from the NICU. Casey started with physical therapy, and then we added speech, vision, and eventually occupational therapy as well. After we moved from California to Texas we also added a play therapist. I had never heard of play therapy, but it’s actually a pretty cool concept.

It took us a few months to get used to having therapists come into our home. Once we got used to it, however, they became part of the family. We relied on them for so much more than just their therapy skills. They were able to help us find the best types of toys and adaptive equipment for our child. They were able to help us find doctors in the area that could handle our needs. Some even helped my husband find adult resources when he hurt his back. They also connected us with some local organizations and families.

Transition to School

Around Casey’s second birthday, we found out that as of a child’s third birthday, the child no longer qualifies for Early Intervention services. The law states that as of a child’s third birthday children may transition to the school district for their services, and virtually all states and school districts provide services in this manner.

It’s hard enough for the parents of a healthy child to send their child off to school when he or she is five. The thought of sending my child with special needs to school at three was just too much for me.

As it turns out, the school does take over services, but in many cases these services can still be done in the home or a daycare setting. Some children may also enter what is called a special needs preschool program.

We talked with the school administrators and with Casey’s medical team, and opted to do Homebound Services, which is not to be confused with homeschool. Homebound is when a child is not able to attend school, usually for medical reasons. The school will instead send services to the child’s home. Homeschool is when a family chooses to keep a child home and typically (not always) one of the primary caregivers/parents will assume the role of educator. For children homeschooled there are curriculum guidelines in place for the home educator, but the school is not as involved.

Comparing Early Intervention and School-Provided Services

In addition to the people providing the services changing, there are a few other major changes when you transition from Early Intervention to the school district. We were getting daily written progress reports from the Early Intervention therapists. We could see what they were working on, and how they felt Casey was doing. When we moved to the school services, the progress reports are not daily. Instead we get one per semester from each of the different therapists. We have an opportunity once a year (more if needed/requested) to meet with the team to discuss progress, set goals, and work on a plan for the next year. This process is referred to as an ARD in Texas, and an IEP meeting in most other states.

Another major difference is that Early Intervention services were all year, and school services work on a school calendar. Children can request (and some will receive) extended school year services, but even those are not all summer.

Early Intervention services are focused around having a child interact with the environment, comfort, and safety. The school, on the other hand, is focused on safety and finding ways to get the child to reach his or her educational goals. Depending on your child these may not seem very different at all, while for others the goals may seem like complete opposites.

School Options

The primary goal for the school is to find a way to get your child to attend school, and if possible they want to have your child in a mainstream (inclusive) classroom. What does this mean? Once a child is medically able to attend school, the school will have a few options. The school, parents, and medical team work together to determine which of these options is safest and will provide the best environment for the child to learn.

This may include:

• A child being completely immersed with other children in the school and using adaptive aids in the classroom.
• A child being mostly integrated but being pulled out from time to time to work one-on-one (or in a small group) with different therapists.
• A special needs classroom with more teachers/aides to better meet the additional needs of the children.
• A more private medically fragile environment where the child has his/her own nurse, and there are only a handful of other students, all with similar complex medical conditions.

Not all schools offer all of these options. Your district may have your child attend a school far from your home in order to meet your child’s needs. If, for example, your child needs a medically fragile classroom and the district does not offer one, your child may stay homebound, the school may create a medically fragile environment, or the child may be transferred to another district.

Our daughter needed a medically fragile class, and our district did not have one. After a lot of work, our district created an environment based on Casey’s needs. She started by attending a couple of hours a week.

It was very scary to let her go to school. She took her nurse with her, and she loved it. She got to sing songs, color pictures, learn about letters, numbers, animals, and participate in all kinds of fun stuff. We still had a hard time leaving her at the school and coming back home, but that was just us missing our baby.

She was growing up and we were incredibly proud of her. I just wished we could have slowed it down a bit!

Marty Barnes is a native Texan and best known as Casey’s mom. Marty and her husband created the nonprofit Casey’s Circle after Casey’s passing in 2016. This organization offers many tools, resources, social opportunities for children who are medically complex, and bereavement events. Casey’s Circle also includes educational resources specifically designed for caregivers of children who are medically complex.

In addition to her own organization, Marty is very active in the special needs community and works closely with her community’s local children’s hospital and the Palliative Care Team to help improve family centered care and best practices for children with complex medical needs.

In her spare time Marty enjoys movies and swimming. She never passes up a chance to share Casey’s story or to meet another parent of a child who is medically complex. Being able to connect and help other families through Casey’s story has become Marty’s mission and passion.