Friday, May 3, 2019
The crisis of Becca's birth and medical complexity began in 1989 and her lengthy NICU stay would put us on the road to learning to Parenting Special Needs and the road to navigate the very new and challenging world of medical needs and school.
An improper unplanned discharge set up the first time I would have to face advocating to change the system. My sister who was in medical administration made a phone call to the state talking about the lack of discharge planning for Becca after six months in the NICU. Twelve days of no sleep, no help and no lifeline, I was taking care of a child who still belonged in the Intensive Care unit alone and wthout any tools.
Heading in one day to visit Becca I was met with the social worker at bedside. The hospital's quality control and administrative leads wanted to have a meeting where we talked about what happened and this Mom was scared. Santa meeting Becca at bedside was the calming force before heading into the boardroom to tell the story of my twelve days home with Becca and answer the boards questions.
That meeting would not only change everything for Becca but would get Becca's primary nurse hired as the first NICU full time discharge planner. The hospital would continue to set up and coordinate the home care that our new primary doctor had been trying to set up from home and that took Becca back to the hospital.
The hospital arranged to put together a Care Conference with all the people involved in Becca's care.
The Doctors, the Case workers from the county and the hospital (Waiver services were put into place), her Primary care physician, the Birth to Three services workers, the School District, the Nursing agency, the County Health Nurse and our Pastor from our church. Thirty-four people to get Becca home and surround her with the care she and our family needed to be safely out of the hospital. Planning for palliative care long before it was ever dreamed of being a concept. We talked about what to do if she needed to go back to the hospital or heaven forbid she would die at home. A topic no parent would ever want to face. How to avoid a length Child Protective Service investigation that would endanger my other children from not only losing loosing their sister, but their family while they awaited the results of the autopsy that would clear us of any wrong doing. They had seen stories of other children being removed from the home after the death of a critically ill sibling. I learned that the CPS system is there to protect kids but sometimes it just doesn't get things right. Children who die at home it is always someones fault. We had to make plans for just that circumstance, because they thought the professionals had little hope of survival. But on the flip side they worked on goals for her development, goals to continue to music therapy that I had started at bedside within 24 hours of being in the NICU.
Becca was fortunate to be born shortly after Katie Beckett opened the doors to getting our kids out of the hospital and home. A waiver of funding based on Becca's income only brought Becca home and the supports she needed to be there. Becca was blessed to qualify one of Minnesota's 200 waivers for children and adults who needed to be at home at Intensive care level needing hours of RN level nursing and that was provided by the pediatric nursing agency Caregivers Network. They coordinated the care at the hospital and even had the main nurses train while she was still in the Pediatric Intensive Care unit. Care coordination at its best.
IFSP my first experience a school acronym and my first meeting within the educational system. I was invited to be a team member to help creating an Individualized Family Support Plan for Becca's education at 6 months of age. Becca once home would start having the physical therapists, teacher from the school both coming to our home. School at home with a tiny baby. She was in her own environment and the nurses and I and her siblings all included in helping Becca learn and shine.
Becca was blessed with a Medical HOME already back in 1990 after advocacy that not only gave Becca her freedom to be home, but the tools she and our family needed to SHINE.
Thank you Children's Hospital of St. Paul for the gift of thinking out of the box and creating a Medical Home for Becca and being apart of her care for the first 7 years of her life. Thank you to all the systems that came together to make that happen.
Wednesday, May 1, 2019
|31 Days of Stories of School Success|
I have been a parent of children with special needs for a very very long time. With my tribe of a dozen unique children and we have struggled, but we also have found out of the box thinking to accommodate some of their very unique needs.
Too often we talk about all the problems and struggles we have with schools and our children with differing abilities, but rarely we celebrate what is working. We as parents finding ourselves in the isolating world of "fighting" the schools, trying to advocate for our kids outnumbered by the professionals that sit across the table. We are up against the wall and seriously the ongoing stretching of parents and families to get the unique Individualized Education Plan that was promised, a challenge for all with time, resources and lack of knowledge to help our most vulnerable children.
As a parent I have had to become well-versed in IEP and 504 plan laws, advocating and not crying at IEPs, going to trainings and attending webinars over these now over two decades with this tribe of mine and learning to help parents advocate for their children. We see all the posts of the social media about IEP parents and the meetings from H.e. hockey sticks. School professionals talk about the failures of the family, parents not doing their parts. Schools blaming the family, family blaming the schools. The divisiveness fueled by frustration, by lack of funding and most of all the uniqueness of our children and their failure to fit in the box of school.
I need to get back to writing after finishing my latest project and here goes my crazy idea. Too many times we only hear the negative stories, I am challenging myself for the countdown to the end of the school year to write stories celebrating "What We Did Right."
Day 1 Kindergarten Hooky
Looking back, my children on one end of the bell curve, was just the preparation for my children who would come into our family on the other with their differing abilities that do not fit in the box.
For me it all began with when my daughter came home from Kindergarten early 35 years ago and it was not time for the school bus to arrive, I learned very quickly that schools struggle with our out of the box children. My daughter was bored and a phone call to the school saying that my Kindergartener had been playing "hooky" and had spent the day hiding in the garage reading a chapter book instead of going to school and that school was boring and for babies. 17 days of missing school and it was only October. Tummy aches, vomiting and her behavior was telling me something that I was missing. That day was the lightbulb moment, she could finally tell me in her little 5 year old wise way, school did not fit.
I was 'just' a Mom with 4 children under 6 and not knowing what is normal or typical. Was it normal for kids to read before kindergarten? Talk before she could walk? One day while sitting in the bathroom when she was two, she asked me about times. I said, "Clock times?" She replied, "No Mommy, the x with the numbers and the equals sign." Thinking, "How do I explain this to a two year old? Two two times." She piped up 4. Then moving on through the lower facts three three times. She replied "3, 6, 9 Mommy!" That is when my two year old mastered addition and in less than 15 minutes could do all the facts through the 6s.
A phone call to the school counselor, explaining my daughter's day of playing hooky, listened carefully and then said "Mrs. Yurcek, you are describing a child who is far ahead of the other children and we have a speaker tonight at a parent meeting coming into the school district. Could you come to the school at 7 and hear the psychologist talk about 'gifted children'. This Mom was the slow learner on this lesson.
My husband and I found a sitter for our littles and left for our first adventure into the world of special needs education. As the psychologist talked about all the traits of gifted children, we just nodded our heads and looked at each other with understanding that we had one of those kids.
After the meeting, we stopped and talked with him and made arrangements the following day for him to privately pay to test our eldest daughter. Well, it went on the credit card, as we lived paycheck to paycheck. The results surprising she was definitely gifted but her learning years ahead of her classmates. His recommendation was to skip her ahead two years, but the school district would not agree and placed her in an inclusive gifted classroom. They felt gifted kids needed to be with their peers and in their appropriate grades. In the classroom the teachers were trained to teach to their individual strengths and challenge the students while teaching the required curriculum.
She was still bored, but I learned to teach her at home and follow her strength based learning. Garage sales found the math workbooks and textbooks that she would challenge herself with. She found friendship with other kids who were like herself. She had a social world of school, an important piece of learning was to get along with others.
We were blessed to have been in an out of the box forward thinking school district and a move to a new home at 3rd grade had her missing her friends, bored, and struggling with headaches. I knew I needed to do something and the times were opening the doors to out of district enrollments. I pulled the kids from our home district and back to the smaller school district with the gifted program that my daughter and some of her siblings needed.
But as with any out of the box child, we had our struggles. Work was mundane, repetitive and she would argue with the teacher when she felt they were wrong. She loved to debate the answers on tests to challenge the teachers thinking. By the way, some teachers do not like kids who speak up and prove them wrong. I found myself in the principals office a few times advocating for my outspoken daughter. And her grades would show us what subjects and learning she felt valuable.
I became Mom and bus driver, making multiple trips to the schools for my growing family. You do whatever it takes for our kids educations. The school would work with us to diagnose my youngest sons dyslexia and the head of the special education department told me that it was very common for gifted children to have learning challenges. Any child who does well in Math and cannot read, there is a problem.
Time would go on and now those children are grown, making it to places I never believed possible. My daughter a Vice President of a major corporation. Her bossiness and out of the box thinking took her to the top, she challenges herself and if it becomes mundane she has to move up to the next challenge. My son who is dyslexic is working in insurance and project management, his understanding of himself and modern technology has helped level the playing field for him to do his job well. They all have found their ways, but school was just part of the journey. It was out of the box thinking, working with the schools and teaching and nurturing their strengths.
One day talking with my daughter, apologizing for not being able to afford to send her to the private schools that she needed. She told me "Mom you did the best you could and you allowed me to be social and be with the other kids and that helped me understand how to deal with people in the world."
I learned that having children who are gifted is a challenge of its own, just another kind of special needs student. We now have advanced placement and other courses in high school, but now Kindergarteners are reading doing challenging learning but on the flip side, most children are not developmentally ready for those learning challenges.
I learned to let my children play, learn, challenge themselves, and nuture their strengths and they do grow. I learned that it was my job to advocate, reach out and ask questions and partner with our teachers and schools to find and create out of the box learning opportunities. And when it wasn't working to think out of the box and find or create what they needed to shine.
A special Thank You to Spring Lake Park School District in Minnesota for your part in my children's educational success.