Salimah Jones APRN, FNP-C
A Tribute to Isyss
The beautiful girl featured in the photo is my 11-year-old daughter Isyss. She was diagnosed with ASD around the age of three. Like most parents, receiving this diagnosis was one of the most devastating experiences of my life. I became so overwhelmed with the feelings of hopelessness, worries about her future, her quality of life, and the ultimate fear of what will happen to her when I’m gone.
Our story is pretty typical. Isyss’s development appeared to be “normal” up until around 12-18 months of age. This is when she began to show signs of regression, such as limited speech, poor eye contact, a strong fixation with certain objects, and withdrawal from social interactions. She would become extremely irritable when her routines were interrupted or when she was around large crowds of people. She often dealt with her frustrations with self-destructive behaviors such as banging her head against walls and biting the skin off of her fingers.
As time progressed, Isyss continued to display abnormal behaviors. During Christmas and birthday parties, she would open presents and be more interested in ripping the paper and shaking the boxes than playing with the toys that were inside. She was able to repeat words and phrases, but unable to have meaningful conversations. It was truly as if she was “in her own world.”
I asked God to Cure Her….
I’ll never forget the day I had a mental break down. I fell to my knees and cried out to God, begging him to please cure my daughter’s autism. It was the saddest, most desperate, and helpless prayer ever. I stayed there for what felt like hours, on my knees asking God for a miracle. I just wanted my daughter to be “normal.”
God didn’t answer my prayer. Isyss still has autism, but remarkably she is extremely high functioning. She now enjoys social interactions, has intelligent and meaningful conversations, has no behavioral issues, and no longer does anything to harm herself. She has received years of intensive therapy, including speech, OT, and special education integrated into her regular classroom. She continues to have some learning difficulties, but she is thriving in school. During her last medical evaluation, her “autism was undetectable.”
We Are Blessed
This is a prime example of the work of our almighty God. His ways are always higher and his purpose is always greater. Over the years he has provided me with so many amazing resources that have helped my daughter reach her full potential. He has also showed me how to appreciate all the different things about my daughter’s autism that have turned out to be incredible blessings. Here are 3 reasons why I would never change my daughter’s autism.
#1 She Doesn’t Understand Racial Discrimination
My husband is biracial, so Isyss has grown up with family members who are Caucasian and African American. We have attempted to explain this concept to her but all she can see is “light skin” or “dark skin”. If you show her pictures of people who are white, black, Hispanic, etc., she can’t identify these races, because no one is truly the color white or the color black. A major characteristic of autism is difficulty comprehending concepts that are abstract. Her inability to distinguish these differences is one of the most amazing things I’ve ever witnessed. In her mind we are all just people with different shades of skin color. Imagine if everyone could view the world the way Isyss does? There would be no racism at all!
#2 She Loves All People the Same Way
It doesn’t matter if you are her mother, cousin, friend, or a complete stranger, Isyss loves everyone and doesn’t want to see anyone hurting. Whenever she witnesses anyone arguing, fighting, or someone getting into any type of trouble, these things truly cause her to become sad and emotional. Her difficulty with abstract concepts limits her ability to fully understand the differences in relationships amongst people. She has cried to me on many occasions after witnessing random children arguing or because a student she doesn’t even know was scolded by a teacher. I envy her ability to love and care for everyone exactly the same. This is the ultimate representation of how God wants us to love one another.
#3 She Tells the Truth and Holds You Accountable
Forget about not fulfilling your promise or keeping your word when Isyss is around. If you said that you would do something, as far as Isyss is concerned you are supposed to do it. Her brain cannot process when people say one thing then do another. She will also tell the truth no matter how painful the consequences are. I never have to worry about her lying about doing her chores or finishing her homework. If she didn’t feel like doing it, she will just come right out and admit to it.
I recognize that we are blessed and I thank God for what he has done for Isyss. I also thank him for the work he continues to do through Isyss. Having her in our lives is a constant reminder of his love, and I couldn’t imagine our lives without her being exactly who she is. I believe all people with special needs have a unique purpose, and I am hoping that this story will provide someone who may be struggling with some hope.
Here are some examples of a few resources that really helped my daughter with her special needs.
IPAD and Kindle Fire
My daughter learned how to read by using the IPAD. We downloaded interactive stories such as the Bernstein Bears and the Bible App for Kids, that would read to her and allow her to touch and interact with the characters. She began reading fluently at grade level when she was around 5 years old. Now at age 11, she still doesn’t go anywhere without her Kindle. She uses it to play games, read stories, and watch YouTube videos that keep her entertained and happy. It truly brings her so much joy!
Isyss was not strong enough and did not have the balance to ride a regular bicycle. We bought her one of these razor tricycles and she absolutely loved it! It allowed her to still play outdoors with the other kids who were riding regular bikes. The children in our neighborhood who were her age also liked to ride it so it helped her fit right in!
Children with autism often have a need to self-sooth when they feel stimulated. This rocking chair helped my daughter to remain calm. I believe it is a great way to reduce some of the self-destructive behaviors she used to have such as the head-banging and finger-biting.
If you have or know someone who has a child with special needs, please like and share this post. I would love to also hear your stories about other helpful resources. Please comment below. Don’t forget to subscribe!
About the Author
Hi. I’m Salimah Jones, Family Nurse Practitioner, author, and expert nursing career consultant. As the founder of The Nursing Guide I help aspiring and current nurses achieve success in their nursing careers. I have been in the healthcare field for over 10 years and have extensive experience in nursing education, leadership, and management. I had to overcome tremendous obstacles in my life to get to where I am now. I would love help you on your nursing journey. CLICK HERE to join The Nursing Guide Facebook Group and to connect we me and the other community members.