Hand to Hold's Official Blog: Written by Parents for Parents

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, medications, etc.  A lot of us also are introduced to a form of early intervention services for our child.  In Texas these services are call ECI, each state has their 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 ECI program.  Specialists are generally therapists, but also include social workers, developmental guides, etc.

We received therapy services in our home shortly after getting home from the NICU.  Casey started with physical therapy, then we added speech, vision and eventually occupational therapy as well.  After we moved from California to Texas we added a play therapists as well.  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.

Casey's ECI Graduation

Casey’s ECI Graduation

Around Casey’s 2nd birthday we found out that as of a child’s 3rd birthday they no longer qualify for ECI services.  The law states that as of a child’s third birthday they transition to the school district for their services.  I don’t know if this is all states, but I know it is most states for sure.  It’s hard enough for a parent of a healthy child to send their child off to school when he/she is 5.  The thought of sending my child with special needs to school at 3 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 day care.  For some children they enter what is called a special needs pre-school program (PPCD in Texas, each state has their own abbreviation).

We talked with the school administrators and with Casey’s medical team and opted to do Home Bound.  Not to be confused with Home School.  Home Bound is when a child is not able to attend school (usually for medical reasons).  The school will then send services to the child’s home.  Home School 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 Home Schooled there are curriculum guidelines in place for the home educator, but the school is not as involved.

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 ECI 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, each state will have it’s own name.  Another major difference is that ECI services were all year, the 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.  The ECI services are focused around having a child interact with the environment, comfort, and safety.  The school is focused on safety and finding ways to get the child to reach their educational goals.  Depending on your child these may not seem very different at all, while others may seem like complete opposites.

Casey at school

Casey at school

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 can be anything from the child being completely emerged 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 therapist, a special needs classroom with more teachers/aids to better meet the additional needs of the children. or 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 not near 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 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 attending a couple of hours a week last year.  It was very scary to let her go to school.  She takes her nurse with her, and she loves it.  She gets to sing songs, color pictures, learn about letters, numbers, animals, and all kinds of fun stuff.  We still have a hard time leaving her at the school and coming back home, but that’s just us missing our baby.  She is growing up and we could not be more proud of her.  I just wish we could slow it down.

Hand to Hold has provided a Lunch and Learn to talk about the transition from ECI to PPCD.  As part of that session we have put together a document that describes the 2 different services, as well as a side-by-side comparison.  We will be having this talk again on August 24th, 2012 10:AM-11:30AM at Easter Seals in Austin Texas.

Marty Barnes About Marty Barnes

Marty Barnes (TX) is mother to Casey, a preemie born at 36 weeks.  Casey suffered trauma during delivery which resulted in brain damage, and she has multiple medical needs as a result, including a life-sustaining feeding tube. Marty established the CLU Campaign, a grassroots inclusion project, along with her daughter’s site which chronicles their journey. Marty is an active community volunteer and currently gives her time to Hand to Hold, Mommies of Miracles, and Texas Parent to Parent.

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