Silent Brilliance: A Journey of Love


Silent Brilliance: A Journey of Love

     Meet this beautiful girl who is continuing to teach us all about love, joy, and inclusion. She is 14 years old and lives in Iowa.

She is non-verbal yet says so much with her eyes and body language. Because she is the granddaughter of my sister-in-law, I have known her since birth.

     I recently had the privilege to visit her in October when I discovered she loves all things related to Halloween. She was in 

her wheelchair in her living room, and as I gave her the brightly lit Jack-O-lantern, her face lit up. She has a smile that lights up a room. She utilizes an eye gaze system, which is an electronic device that allows a person to control a computer or tablet by looking at words or commands on a video screen. However, by the end of the school day, she is physically tired from using this, so at home she has pictures and yes/no cards to communicate. 


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

A: Ah- it’s difficult to choose just one! I guess my biggest wish is that her teachers and paras will always remember to see the child and NOT just the diagnosis. Also, it is very difficult to integrate children like her into mainstream classes as she gets older. One method I do hope teachers use is to introduce typical peers on a one-to-one or small group basis within the special ed. classroom. It should definitely go both ways.


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: She is very bright and knows so much more than anyone even knows! It is just so hard for her to take tests with the language barrier, and her eye gaze system wears her out a lot. Children like her will take a lot of time and patience to fully illustrate their knowledge and abilities because of this,


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

A: She does not do homework at home. She usually refuses and we do feel a lot of empathy because she is so worn out after a long day of school.


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

A: At birth, unfortunately. It was a very traumatic period in all our lives for many reasons.


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

A: Don’t research too much! Let your child take his/her own path, without over-anxious parents hovering. No matter what, you need to try and enjoy every single day you have together. Worry inhibits joy, and it doesn’t change one single thing.


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

A: N/A- She is tube-fed, so unfortunately she doesn’t get to enjoy a family meal like other children. She does love small tastes of snacks and especially birthday cake, though!


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

A: Don’t just see the disability, see the child. A simple “Hello, how are you?” goes a long long way. Lead by example- you never know who else can learn from your interactions. Even if he/she cannot respond, you should assume the child understands everything you are saying. Assume intelligence, always!


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

A: Date nights whenever possible- even if just for a few hours. Caregiver fatigue is difficult on each parent, and their relationship, too. I personally enjoy soaking in a whirlpool bubble bath, and occasional massages. Find some trusted non-family respite providers or centers, and try to take a minimum one long weekend away once a year. Don’t be afraid to ask for help- it takes and especially large village to raise a child with special needs.


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

A: For children with cerebral palsy- I run a Facebook page called, ” The Beautiful Faces of HIE/CP.” It is only for parents( not teachers or medical caregivers), but it is a fantastic resource. Please don’t allow yourself to feel completely alone, because there are always others feeling the exact same way.


Q: What are your favorite family activities?

A: Swiming, vacationing, boat rides, playing corn hole games, Uno and Yahtzee games,  watching hockey and football together, time outdoors enjoying our fire pit, and celebrating holidays and birthday parties.


     This happy-go-lucky and sassy girl can light up a room with her smile! She loves music and has benefitted from music therapy through the years. When she was born, her parents looked for a house suitable for her needs. They found a beautiful spacious house with wide halls and doorways.

     When she was first born and in NICU, the doctors had very grim predictions, but she has proven them wrong. She is strong, she is smart and she is resilient. I am delighted she has parents who have thought of her every need and provided opportunities for continued success. Her classmates at school love her dearly, and she is a joy to all who have the privilege to meet her. Her mom said it best when she said, ” They are just children; don’t see the disabilities but assume intelligence always.”

Pink Lock photo- Towfiqu-barbhwiya on Unsplash