Mommy of a Miracle: Back to School!

kristinToday’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares Isabella’s back-to-school experience. To contact Kristin, tweet @KristinOlliney.

Some parents are excited that their children go back to school; some parents are not.  Some kids are thrilled to be back with their friends even if it means homework; some kids are not. There are many parents and children who fall somewhere in between being excited and not so much.

Back to school is generally a time filled with clothes and shoe shopping, picking out the “first day of school” outfit, purchasing school supplies, backpacks and lunchboxes.  Three years ago when Isabella had her “first day of school,” it was for preschool and those were the things that I was happily focusing on. The morning of that first day was filled with pictures, videos and excitement.  When the teachers came out and it was time to go into preschool, Isabella kissed me quick and off she went.  Isabella did amazing.  She loved preschool.  Isabella had lots of friends from all different backgrounds and she was so excited every school day.  Three months into preschool, Isabella suffered from sudden acute encephalitis.  Life as we knew it was forever changed.  She has not physically gone back to school since then due to various medical concerns.

After having little success with the town we lived in, I specifically moved to our current town this spring because of their highly-rated school system.  This particular town has a reputation for having a great special education program.  I want Isabella to have everything that she needs so we relocated to give her the best opportunity to succeed at school.  I have worked with our special education advocate, alongside our medical and behavioral team, to get everything in place for Isabella to start first grade.  Unlike the fun prep work for preschool, the focus has been on Individualized Education Plans (IEPs), a Health Care Plan, a Behavior Support Plan (BSP), Food Allergy Accommodations and Transition Plans.  Below are a little bit about each:

Individualized Education Plan (IEP) has been created by Isabella’s team–both outpatient and in school.  This legally binding document discusses what kind of placement Isabella will be in (sub-separate classroom versus general education classroom).  The IEP has measureable goals, accommodations and other specifics that Isabella needs to help her be successful at school.

Health Care Plan is created by the nurse to medically prepare for Isabella’s multiple health issues while at school.  This includes her seizures, immune deficiency, food allergies, asthma, medication, etc.  There is a brief medical history along with prescription orders and emergency action plans.   This plan helps keep Isabella medically safe while at school.

Behavior Support Plan (BSP) addresses how best to interact with Isabella such as delivering of instructions, visuals to help her learn and understand what is being asked, de-escalation strategies and replacements for her self-injurious behaviors.  This document is key to helping Isabella before she becomes aggressive because she has no regulation over her mood, behavior or emotions, etc.

Food Allergy Accommodations are precautions that are put in place to prevent an allergic reaction.  Isabella has several life threatening allergies to food.  Some of these preventative strategies include hand washing by all who enter the classroom, cleaning of all surfaces, separate eating areas, pre-labeled supplies (that have been checked by me), etc.  This helps Isabella stay safe from her allergens.

Transition Plan is a very detailed schedule of how Isabella will gradually start out (with a very short time) at school.  Then gradually decrease my presence in the classroom (fading me to the hall and then to the office) while increasing her time in school.  The ultimate goal is for Isabella to attend school 3 days per a week for 3 hours per a day.

The past few months have included a lot of thoughtful planning.  We have read social stories about going to school.  Isabella toured the school and she saw her classroom several times.   She had several opportunities to interact with her teacher.  We had “open house” at a special time to set up all of Isabella’s visuals.  We even had a countdown at home anticipating the first day of school.

The first day of school finally came and unfortunately it didn’t go anything like I had imaged.  Isabella was adamant that she was not going to school.  She screamed, cried and fought when it came time to get ready.  I used everything that I could to help her physically get dressed.  Once Isabella was dressed I was able to distract her and I got a few pictures.  Once I got pictures taken it was time to get in the car.  I managed to get Isabella into the car kicking, screaming, crying and fighting.  She was hysterical the entire ride to school.  I kept going over how fun and exciting it would be.  I reminded her that it would be her and I together going to first grade.  I talked about how nice her teacher was and how they had super cool toys.  We got to the school and I went into the class with her.  Isabella continued to struggle.  She was aggressive and defiant.  Isabella’s anxiety was off the charts; she was overwhelmed and sensory-overloaded.  We were there for 20 minutes so that it would end positively.  I was hopeful that day two might go better.  Day two was horrible and even worse than day one.

The first-day-of-school milestone was huge because Isabella wasn’t supposed to make it through the night almost three years ago–never mind make it to first grade.  It is a very bittersweet moment.

Brain injuries can make amazing milestones (like going to first grade) heartbreaking and sad.  Transitions, changes, new routines and anything unfamiliar is terrifying for Isabella.  She often lives in her own world and anything outside of that world is traumatic for her.  Most kids come home from their first day so happy and excited about the year to come.  Isabella came home and slept for 3 hours because she was physically, emotionally and cognitively exhausted from the trauma that was her first day of school.  Isabella on her first day of school.Since Isabella and I started on this journey, one thing I have learned is that all I can do is take it one day at a time and even one minute at a time if needed.

This is a picture of my beautiful miracle Isabella on her first day of school.  This picture is just as deceiving as brain injuries are because the struggle is invisible to most. I am telling how Isabella’s first day of school went because this is our life.  It is not always pretty.  I want you to know that if your child has had similar experiences you are not alone.

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