Milestones

It's been a few weeks since I last posted. I have felt the need to stay grounded in the day to day and not be distracted by on-line buzz. It has been a good break for me although if I had more business sense I would be promoting the heck out of my upcoming Creative Retreats here at the farm in July and September. (Info on One and Two Day Retreats here.) 

The milestone I mention is this one. 

Julia graduated from high school a couple weeks ago. I didn't realize what a flood of emotions I would have as the day approached. Julia has been taking part in the local school system since she was three years old because of her special needs due to congenital hydrocephalus - a brain injury which was present at birth. It has been a long journey that is now over. 

As I drove Julia back and forth to and from our farmhouse to the regional school what seemed like a million times for the pre-graduation practices and meetings, I thought back on all the people who have helped Julia (and her Dad and me) navigate the public school system. When she was an infant, therapists came to our home and worked with Julia on movement and cognitive development. When she transitioned to pre-school, the local school system stepped in with occupational and physical therapies. Julia had an in-class aide with her through 10th grade. Those women (yes all women) helped her navigate - both physically and mentally through the maze that is elementary, middle and high school. Jackie Glabach, Cheryl Baker, Leslie Anderson, Sara Cohen, Joyce Wilson, Claudia Christman, Chris Maguire, and Alison Whiteman 

The special ed coordinators and directors - Gordon Parker, Sharon Jones, Deb Lanou, Claire Brennan, and Chris Maguire - were there behind Julia - looking for the right opportunities and help that was available and what would benefit her the most. I have always felt that the Special Education Department had Julia's best interest at heart - and I want to thank them for all that they did for her and fought for her to get the best public education in our rural school district.

When Julia was 6 she was diagnosed with Type 1 Diabetes. Then began her several times a day interaction and close relationships with the school nurses. Mary Lavalley, Vickie Rowe, Carla Simpson and substitute nurses Sharon Fontaine and Lonnie were all there for Julia as she learned to navigate her chronic illness. Through the finger sticks, to the low and high blood sugars, through learning to give herself injections, to the intense learning curve of insulin pump therapy, the school nurses helped and coached Julia through it all with kindness, cheerleading and mental support. 

Other people have been so kind and supportive along the way for Julia. Guidance counselor Matt Soycher has given her confidence that she can continue your education at the local community college. Athletic Director Gina Johnson has cheerleaded for Julia since she was an infant and offered her a modified personal fitness class which kept her safe from flying balls and fast moving kids. Para professional Colleen Kennedy has helped Julia with her confidence since she attended a Summer School Program at three and then again during middle and high school these past 6 years. Kevin Mortenson and Kim Godfrey helped her with her assignments in the Learning Center. Teacher Barb Killeen encouraged Julia to be the historian in the National Honor Society and was a great influence for her as she learned to work with little kids in the Child Development Class and Panther PreSchool. 

Mr. "P" became a favorite teacher these past couple years as she took Advanced Woodshop and made a beautiful pieced quilt design table, sheep cutting board, wood platter, a stool, striped platter and carved spoon. It is so great to see how proud Julia is of her projects that she made with her own hands, wood, and power equipment, along with help from Paraprofessionals Ruth Hanlon and Gail Streeter. 

Kathy Abbott, Business, Yearbook and Accounting Teacher nurtured Julia's special traits and gave her confidence and guidance. English Teach Amy Brown welcomed Julia into her classroom at lunch time for conversation. I am sure I missed some teachers that helped Julia get through and to all of you, we are very thankful for such great educators.

The evening before graduation, I watched senior after senior get academic, sports and assorted awards. I thought back on Julia's journey which has been so different from the other kids who were graduating as has our parental journey. She was given an award for students who have struggled with disabilities from the Owen Clarke Foundation. As she made her way back to her seat, I heard adults behind us snicker as Julia slowly descended the stairs with her cautious movement, taking the stairs I step at a time, catching the sleeve of her gown on the railing. I couldn't help but turn and leer at them. Did they realize how hard this kid had worked to get through high school - to face her problems that life has dealt her? Did they realize that not all kids are superstars, athletic stars, geniuses? This kid, my kid, deserved every award out there but that is not what our society rewards. I left the ceremony with lots to think about.

School has not been easy for Julia. Because of her disability, she hasn't fit in with the other kids. It really hasn't bothered her much. She has always preferred adults to kids and has always considered adults her friends. I thought back to my days in high school - to the fun I had being in the high school band, the plays, the overnight band trips, welcoming foreign exchange students into our home, learning to sew with Mrs. Airola, hanging out with my friends. Julia's school experience has been so different than most kids. It wasn't bad - just different. 

The next evening at the graduation ceremony, Julia was paired with the President of the National Honor Society to walk down the aisle. She got on the stage okay but why did they put her on the third level? Elizabeth Sweeney gave the Salutatorian speech and kindly mentioned Julia by name and why she would miss chatting with her as all the kids go their separate ways. As Julia waited to get her diploma, her dad and I held our breath hoping that she wouldn't fall down the stairs. Her name was called and it is all a blur to me. I yelled and cheered for her, successfully holding back my tears. Her classmates stood up and gave her a Standing Ovation which was very sweet.  

I am a first born child - number one of five. Like many first borns, I am Type A - achieving, producing, making, doing has always been part of my modus operandi. As I have navigated the waters of parenthood with a special needs child, it has not always been easy or natural for me. I have had to learn to slow down, have patience, see things differently and from other points of view, try to understand the physical, emotional, and educational needs of my child. I do not always do this well. I have to catch myself - bite my tongue and take a deep breath. I no longer see myself as Type A - I have changed because of Julia and because of living on a farm where there is no control over nature and what she throws at you. I have sat in many an IEP (individual education plan) meeting, only to leave in tears, hoping that my child was getting what she needed, realizing that she would not have the childhood or life I have had. My sister Laurie has always been my go-to for help as she too has a child with special needs. Her support over the years has been so helpful for our family and for that I will always be grateful and thankful. 

As we pass this very big milestone in Julia's life and our family's life, we are now onto the next great adventure of navigating what is next for her. It isn't going to be easy as all the support that we have known and that was available through the public school system is done. Support will be harder to find. Will she be able to hold down a job? Will she learn to drive a car? Will she be able to get through a college course? So many questions and possibilities. 

Photo by KLR Photography

As I look at the current political climate I fear greatly for Julia's future and for others with disabilities and health problems. I hope that there will still be help out there for people like Julia - that the politicians will continue to fund the programs for those who cannot take care of themselves without some kind of financial aid. Her Dad and I will not be around forever and our biggest goal now is to have her be able to support herself somehow, some way. It is a big task to ask of an 18 year old - even one without issues. 

We don't know what is next and the chapter will slowly unfold but for now, I am just so proud of Julia and what she has accomplished with what life has thrown at her. And so thankful for all of the educators who have helped her along the way.  

p.s. I'm not looking for pity by writing this - just sharing our experiences with a special needs child. Published with permission from Julia.