Fearless and Fabulous: Her Diagnosis Does Not Define Her

Fearless and Fabulous: Her Diagnosis Does Not Define Her

     I am retired, but occasionally I like to substitute teach in special education. The love of kids with special needs will always be part of who I am, and I have my favorite schools and teachers. This young girl is in one of my favorite schools, and I am happy I have gotten to know her as a kindergarten student. She actively engages in all the lessons and the kids in her class seem to love her and include her in all their activities. I picked this picture because the aide who worked with her and the special education teacher gave me information about her that was filled with love and happy thoughts. This seems to be the reaction of everyone fortunate enough to meet this sweet girl. My granddaughter got to help this girl this year and loved the opportunity. She was this girl’s buddy on a field trip to the Cleveland Zoo.

     You could tell this young girl had a genuine love for her school and everyone at that school. She ran into school every morning with the biggest smile and greeted everyone in her path. Everyone at school loved her and on the days when she had to miss school, there would be at least 15-20 people, both students and staff asking where she was and if she was okay. They then stated how they missed her smile and greeting. Both her special education teacher and her aide shared those observations with me.


Q: What is one thing you wish teachers know about your child that is not on the IEP?

A: Honestly, nothing, I know that sounds hard to believe but I feel strongly about having a solid vision statement for Faith and goals and objectives that support working towards and accomplishing the vision statement that we (my husband and I) have created for Faith. I also have a document that I created for Faith when she went to preschool that goes into a lot of detail about Faith’s routines, likes, dislikes, family dynamics, safety concerns, current state of abilities, and things she struggles with. It gets updated before every school year and every member of Faith’s team and anyone who may work with her in any way get a copy before school starts. I have not met one person who doesn’t find this to be extremely helpful in starting off with a little knowledge of Faith prior to working with her. We joke and say it’s her instruction manual!


Q: Scores on tests do not define the child. What is something your child is really good at that is not reflected on tests?

A: Manners. She says please, and thank you without any prompting. She is friendly and kind and greets everyone she sees with a hello, how are you, and goodbye, have a nice day. Which always brightens someone’s day.


Q: How important is homework for your child? Is it just a burden, or is it a helpful learning tool?

A: It depends on what it is. If it’s truly something to enforce proficiency through extra repetition I think it’s ok in moderation.


Q: How old was your child when you first knew he/she had special needs?

A: I was pregnant when I learned that Faith would most likely be born with Down syndrome.


Q: What is one piece of advice you have for someone who has a newly diagnosed child?

A: Raise the bar as high as you possibly can for your child always. Do not let their diagnosis define them. Assume inclusion rather than ask for it. Our children deserve to be included, it’s NOT something that they should have to earn. Your IEP team must function as a team and everyone needs to be included in the conversation.

Q: What is one meal that everyone in your family likes to eat?

A: Pizza!


Q: What advice do you have for interacting with children with special needs?

A: Treat them like anyone else never less than. Presume competence always.


Q: What activities do you recommend to other parents to foster self-care?

A: Parent support groups, online Facebook groups, and a strong support system that allows you time to recharge and be the best version of yourself.


Q: Are there any support groups that you recommend for parents or children?

A: Sibshops support workshops for siblings of individuals with a disability. The County Board of DD usually has groups as well. Facebook has a million!


Q: What are your favorite family activities?

A: Playing outside, going out to dinner, playground, and definitely swimming.


     This girl is petite, probably the smallest child in her kindergarten class, but fearless. She is now going into first grade in the fall. Her teacher reports that she will try any activity on her terms. An example is being the only girl out of 10 or more kids in the Gaga ball pit most days at recess. During the Special Olympics field day she won her race by a mile, even though she was the smallest person in her heat. In PE, she competed in every game; in music class, she performed everything her classmates did. When her mother said to presume competence always, it fits this girl very well, for she does not have limits. Her diagnosis does not define her, which is true for anyone with special needs.

     Presume competence always. This is something I have heard from many parents of kids with special needs. Treat them like anyone else. This mom also said she makes a document that everyone on the IEP team gets before the start of the school year that has her daughter’s routines, likes, dislikes, and other pertinent information. Everyone who works with her gets a copy of this before the school year begins. I love this, and as a teacher, I would find this extremely helpful. Everyone needs to be on the same page for success, and this is a great way to establish a comprehensive approach at the beginning of the year. Working together as a team ensures the best outcome for both the child and the team. A unified educational approach fosters a consistent and collaborative environment to contribute to the child’s success.