Eight years ago, I carried my screaming four-year-old out the doors of Target and ran for my car, praying no one would call the cops because they thought I was kidnapping her. Luckily all I got was the judgemental stare-down from the Karen Mom. I could hear her thoughts.
“That kid is too old for a tantrum!”
“What is wrong with that kid?!”
She didn’t know what I lived every day. That tantrums like this one, complete with kicking the backseat of the car, hitting herself or the wall, or telling me I’m “stupid” (because it was the only bad word she knew), was the norm for us. And not because I’m a bad mom or she’s a bad kid, but because she is a neurodivergent kiddo.
At about a year and a half, I suspected that there was something different about my daughter. She walked later than the other two and still had not said her first word. Our pediatrician told me I was overly concerned. “The 3rd kid often develops late,” he assured me. I tried to ignore the unease I felt, but by the time she was three, I couldn’t ignore it anymore. She was trying to talk, but no one could understand her. Most of her words sounded like gibberish, so she would get easily frustrated and melt down into an epic tantrum. We got her into the Early Intervention Program at our local public school at four. They tested her and determined she needed speech therapy and that, intellectually and behaviorally, she was about two years behind. After that year, her speech had improved, but the tantrums were worse. She would hit and bite herself and scream and cry. We endured it for a year, and then a friend recommended counseling. By this time, she was 6. For several months, we saw an incredible counselor who listened to me and suggested we get her in for specific testing for processing issues, ADHD, and ODD.
I will never forget the day they called me in for her testing results. Hubby couldn’t come with me because of a work commitment. As I walked alone through the facility doors, the Lord spoke to me clearly and said, “Be careful what you receive from this meeting.” I knew then that this would not be good.
My beautiful blonde-haired wild child was diagnosed with Mild Intellectual Disability. I was bombarded with numbers, an average IQ is around 100, and hers was 65. And other numbers like the percentage of kids who end up in group homes, and I should probably start preparing myself and her for that future. I was told she’d never be able to live independently, and then I just stopped listening.
“But God has chosen the foolish things of the world to put to shame the wise, and God has chosen the weak things of the world to put to shame the things which are mighty;” 1 Cor 1:27
Hubs and I refused to accept such a dark outlook on her future. Instead, we chose to trust God. We told her that her brain worked differently than other kids but that she was smart and could do anything she put her mind to. And she can. We tell her daily, “you can do hard things,” and she does.
Our pediatrician, bless him, after realizing that our daughter was indeed different, just kept encouraging us, reminding us that intelligence is more than a number on an IQ scale and that things like compassion, empathy, and creativity can’t be measured. She is all those things. Out of all my children, she is the most compassionate, empathetic, and observant. She is fierce and funny, a force to be reckoned with.
She has already exceeded the initial prognosis given at 7. She reads and spells at grade level, does math only about a grade and a half below, and on the basketball court, the girls got game.
But that doesn’t mean there are no hard days. Days where her emotions are too big to handle, the impulsivity that comes with ID gets her in trouble, and the amount of energy it takes to process something seemingly simple wears her and us out.
There are days when I want to lock myself in my room and cry. Cry for the loss of a “normal” future for her and out of frustration that there’s nothing I can do to change it. As a parent with a child with an invisible disability, it can be difficult and lonely. There is a grieving process that one goes through. Intellectual disabilities are unique because no two are identical or present in the same manner. Many kids have secondary diagnoses on top of ID, like ADHD or ODD. Our girl does not, but her everyday life is still much more difficult than her siblings.
I know it can be hard for those with neurotypical children to understand. Over the years, I’ve met many well-meaning individuals who are just trying to empathize, but I’d like to leave this list of things people say that aren’t helpful to a parent with a neurodivergent kid.
1. “My Johnny/Susie had focusing issues, but they grew out of it!” Kids with ID or Autism or any other processing issue will not grow out of it. They can learn to adapt, and their IQs can change slightly (up or down), but processing issues are not like teenage acne. There is no growing out of it.
2. “I was dyslexic in school but turned out fine.” Dyslexia brings its own challenges but is not the same as an Intellectual Disability. There is no cure for ID, and it affects every part of an individual’s life.
3. “I read that these XYZ supplements can help with processing and focus issues. I just know it will help your kid. You should try it.” We probably already have. Parents with kids with ID have read it all and tried it all. Eye of Newt, Batwing Broth, and CBD oil baths are nothing new to us. Thanks for the rec, but we’re way ahead of you.
4. “You need to lay hands on your child and pray against Satan.”
Ugh. Please stop.
I can’t speak for every parent here, but if sainthood could be attained through prayer, the Pope should call us soon for canonization instructions. The truth is it’s not about Satan. It’s not about sin or lack of prayer or faith. It’s simply my girl’s path in this life and ours to walk alongside her.
Instead of feeling like an answer is necessary for a parent with a child who is neurodivergent, the best response is just to listen. Don’t be afraid to ask questions. I know it sometimes helps me to talk through my child’s challenges.
Encourage that parent they are enough for their child.
Tell them they’re doing a great job.
And then pray for them.
Our journeys are all unique and different. I think that’s what’s so beautiful about life. Our challenges and victories shape us, inspire others, and grow us into the person Jesus wants us to be.
I know our girl’s journey, although challenging, will be filled with beauty and courage. We are blessed to walk alongside her and witness it. I can’t wait to see where Jesus will take our girl.
One thought on “A Neurodivergent Childhood”
Amen thank you encouraging words . Aww she is so beautiful and amazing little girl love her . It make me cry resting this .