Seth’S Story: My Journey of Raising a Child with Special Needs

By Jennifer Fitzhugh

Seth's Story: My Journey of Raising a Child with Special Needs is about the trials and tribulations parents face when raising a child with special needs.

Seth's Story provides our personal journey through the world of diagnosis, doctor visits, education struggles, and life after high school.

Seth's Story also includes helpful information for parents of children with special needs on their rights in the public school system as well.

It is a heartfelt story that both educates and informs all parents about how advocacy really does begin the minute our children are born.

• Language: English
• Publisher: Xlibris US
• Release date: May 8, 2014
• ISBN: 9781499008029

Jennifer Fitzhugh

Jennifer Fitzhugh currently works as an Advocacy Specialist for The Brighton Center, where she serves many families who have children with special needs. After graduating from Texas A&M University, Jennifer worked as a special education teacher and administrator in the public school setting. In her spare time, she also served on the Board of Directors for the Epilepsy Foundation, volunteered with the Down Syndrome Association, as well as her continuous involvement with the Glut1 Deficiency Foundation. After earning a Masters in Special Education, she then began her advocacy career educating parents and professionals about special education law and the rights parents have under the Individuals with Disabilities Education Act (IDEA). Jennifer currently lives in San Antonio, Texas with her now 20 year old son Seth, 16 year old daughter Emma, and Sydney, her ten year old yellow Labrador.

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MY CAREER

When Seth turned a year old I decided to return to school to become a teacher. I planned to teach general education students. I thought substituting would be a good way to start. Ironically, my first assignment as a substitute teacher was in a special education classroom with five students all diagnosed with Autism Spectrum Disorder. Those were some of the most amazing days of my educational career. When I got home that evening I realized that I had found my calling in life.

This was the start to my life-long career of advocating for children with special needs. I made it my mission to learn everything I could about every disability, how to teach students with them, and how to make sure that everything they learned was important to their success in life. I taught students with intellectual disabilities for 13 years. I taught these students life skills such as how to read the phone book, how to complete a job application, and how to interpret a bus map. I taught them how to tell time, count money and ask for help. I taught them how to ride a bus, brush their teeth, and make themselves something to eat. Teaching these students was another one of the most rewarding parts of my career. However, schools are a bureaucracy. It was this bureaucracy that at times limited my ability to teach the students what they needed to learn. The funding for learning within the community was limited, yet learning outside the classroom was one of the best ways my students learned life skills. Not to mention the fact that working with students with special needs was taking a toll on my body. I finally had to give up teaching when I herniated the disks in my back. After being injured I decided to move to the administration part of special education. In this capacity I was able to attend many legal trainings about special education policies, procedures, and laws. I learned about what school districts are required to provide for students with special needs, and what services our children are entitled to under federal law. I also took an advocacy class to learn how to speak up for Seth in his IEP (Individualized Education Plan) meetings.

Between being a parent, teaching special education, and attending advocacy classes, I thought I was ready to branch out on my own. In 2008 I started my own advocacy business only to find that the clients were coming and business was good, but I had no idea how to manage a nonprofit organization. I returned to being a special education administrator. I also returned to graduate school, where I earned my Masters Degree in Special Education, while learning more about disabilities and special education law. Then one morning I was looking online for resources and found a posting for the same non-profit where I had taken an advocacy class ten years earlier. They were looking for a parent advocate who could also teach classes to parents of children with special needs. My dream had come true! Ironically, I had recently gone to dinner at a Japanese restaurant and the fortune inside my cookie read, Your next interview will result in a job. I was thrilled about the possibility of returning to what I love most. I am now an Advocacy Specialist for Brighton Center. I advise parents of children with special needs on how to understand the law and advocate for their children in their IEP meetings. I also attend IEP meetings with parents who need my assistance. I find that helping these families is truly the best part of my career.

Now I am doing what I love and am finding that in every class I teach and every meeting I attend the parents all say the same thing… they didn’t know how to properly advocate for their child. They didn’t know how to speak up when things went wrong with the school. The majority of parents who have children with special needs are at a loss as to how the special education process works and therefore how to advocate for what their child is entitled to under federal law.

HOLLAND

In my opinion, the poem Welcome to Holland by Emily Pearl Kingsley beautifully describes the experience of having a child with special needs. Since the day Seth was born I have been in Holland, and at times it is not all tulips. I have worked hard to learn everything I can about Holland and how to make it work for us. Seth and I have been to hundreds of doctor appointments, therapists, clinics, and evaluations. It is a tiring process. That does not include the eating difficulties, the sleeping difficulties, the problems in school, and many other concerns that we, as parents of children with special needs, face. We worry about our kids making friends, fitting in, and being discriminated against. These types of concerns usually do not cross the minds of parents with typically developing children. Parents of children with special needs also live a very different lifestyle. We have to schedule our lives around doctor appointments, therapy appointments, medications, and the constant thought that any minute our child could have a seizure, behavior outburst, or even stop breathing in public.

I vividly remember when Seth had his first visible seizure. He was three years old and sitting on my lap in a restaurant. At that time, we were having dinner with some friends. When we stood up to leave, Seth fell flat on the floor like he had put his finger in a light socket. His legs just gave out. When I stood him up again, the same thing happened. I immediately rushed him to the hospital but could not drive and hold him at the same time. Thank goodness my best friend Rochelle was with me and she drove while I wrapped my arms around Seth to keep him from hitting himself on the window of the car. His little body was thrashing around uncontrollably. This was one of the worst days of my life. We got to the hospital after what seemed like forever where of course they began an array