Have you ever hesitated to share what you are struggling with to a friend because this statement rings in your head, “stop complaining, there are others who have it a lot worse?”
If so, I hope you know that yes, there are varying degrees of struggle out in the world, but that does not mean that your struggle is not real or does not matter.
When I first started to suspect that my child had special needs or was “more”, I shoved it down deep in my chest. I read books about discipline. I tried harder.
Maybe it was fear, or shame, or maybe it was some of those common statements so readily offered. You know the ones,
“He’s just a boy.”
“He’ll grow out of it.”
“You need to discipline your child more.”
“You need to be more consistent.”
Now, when I think back about what life was like when this particular son of mine was almost 3, I remember having a baby and a pre-schooler as well, but it took ALL OF ME to contain him.
I did not want to jump to diagnosis, but I knew that I needed help.
Growing up, I learned about special needs early. My mom was an Occupational Therapist. I have fond memories of stopping by her workplace as she had to drop something off, or pick something up. While she attended to her task, I would take in the environment around me.
On one hand it was one of the coolest places I had ever been. I couldn’t stop staring at all of the toys and equipment. I just wanted to play on everything-especially the swing!
But on the other hand, I often got introduced to kids who required a wheelchair, kids who could not talk, and kids who made lots of unfamiliar noises. Sometimes I felt scared about the unknown I was witnessing. Other times I felt sad. But often I felt amazed. The love and care that the therapists provided them, and the joy that the children expressed in their own special ways was incredible.
I feel grateful to have grown up witnessing this world of amazing people. The exposure to the reality of people living with special needs impacted me in so many ways.
This reality taught me at an early age to have perspective. To be mindful of the way I view things. Sometimes that means being grateful for what I have, when my flesh wants to complain. Sometimes that means, taking a step back to gain a better perspective, to see the big picture and to avoid rash or quick judgements.
But it also taught me that it is possible to be grateful and grieve.
It is possible, to know that there are worse things, but to still worry.
It is true that pain is relative.
Just because someone’s struggle looks different than yours, does not mean that yours isn’t real.
I understand that not all may agree with my way of thinking. But for me, if I had swallowed my concern, tried harder to be better and just kept focusing on the positive, I would have not served my child well.
Let’s be real. There is being positive and hopeful, and then there is “toxic positivity.”
For me, in order to care for my son well, I needed to swallow my pride. Some might think swallowing my pride would have looked like me ignoring the temptation to default to blaming my child’s behavior on a diagnosis and simply “manning up” and being more militant. I believed swallowing my pride truly was me accepting that no matter how hard I tried, I was not going to be able to manage this struggle alone.
Through humility, I was able to walk from awareness that my child might be “more,” towards acceptance and now into advocacy.
Our journey navigating have a child (2 in fact) with special needs started about 5-6 years ago. For those curious what it looked like practically, when he was 4 we reached out to Early Steps and found an OT that specialized in sensory integration therapy. We learned all about sensory processing disorder and we were encouraged to have a continued level of awareness if his needs were to shift or change for the better or worse. And they did.
Around age 6 he was diagnosed with ADHD and we found that it was time to navigate the use of medication to support his struggles and needs. A couple years later, after prayer and discernment, we felt it best to seek out a Neuropsychologist so that we could receive a more thorough evaluation in hopes of truly identifying what might be “driving his ship.” It was then that he was diagnosed with High functioning Autism.
Each year we have experienced intense heartache as well as intense celebration as we have watched him grow and learn, and make mistakes and make progress.
Just like him, we as parents are growing and learning and making mistakes and making progress.
We may have entered into the world of “labels” that so many fear. And I understand that.
But the only real label that we have in our house, is being “A child of God.”
That is the true identity that each of us holds and clings to.
The other labels have provided me with clarity and direction. They have blessed us by connecting us with the most amazing therapists and other parents walking similar journeys. All because of being aware of a great need that I could not fill on my own, accepting and embracing that reality and now being so much stronger for it that I can advocate well for my child.
So if you happen to feel like you need to keep your struggles to yourself, like you need to stuff them down or remember that others have it worse…. Don’t.
Remember, it IS possible to be grateful and grieve. I do it every day.
I grieve that I am a sinner. And that no matter how hard I try, I probably will continue to sin on this side of heaven. It’s not an excuse to sin, but it is a reality that without the help of the Holy Spirit, my flesh WILL fail. Yet at the same time I am SO grateful that because of what Jesus did on the cross, I am forgiven and made new and will get to experience an eternity in Heaven one day!
It is the awareness of my sin, and acceptance that lead me to MY ultimate advocate.
HE who-by the way, will NEVER judge you when you share your struggles with HIM. He will NEVER tell you try harder or to remember how good you have it. But HIS love will wash over you in such a way that you can’t help but be grateful, even in heartache.
Stay tuned for my next blog, I can’t wait to share about how every Mama needs someone who gets “it” and someone who “wants to.” Because every mama, regardless of if they have a child with special needs, is STILL A MAMA. Our struggles do not separate us. They draw us near to one another. And we all have a story to tell and hope to give.