As moms, our inner most desire is the absolute best for our children. Constantly watching for red flags that force us into action. Whether its prevalence, societal stigma, or a system designed for early intervention — we are ever vigilant to identify if our child is different.
Our family’s journey in the world of “different” began when my son was an infant. We realized he didn’t track or imitate sound like his peers. But he achieved all of the developmental milestones on (or ahead) of target. As he grew, he was incredibly socially involved but continued to have difficulty integrating into the world around him. I knew something just wasn’t right.
It took us five years of pushing and a half a dozen specialists to finally arrive at a diagnosis. It was auditory processing disorder. How in a world of “early intervention provides the best outcomes” did it take us so long to get a diagnosis? Tons of families, like us, struggle for years to find answers. Our systems are designed to identify autism, but not the full spectrum of neurodivergent differences.
So how do you get help for your kid? Here is my list of takeaways from our journey with a neurodivergent kid that I hope can help another parent get the needed help.
Trust Your Instincts
Early in our journey, a dear friend asked me, “What does your mama gut say?” As moms we innately know what our child needs. The same way we know the hunger cry from the tired cry, we just know when something is not right with our babies.
Always trust your instincts and don’t accept no for an answer. You cannot help your child if you don’t trust yourself to try and find help.
>> RELATED READ << Raising a Child with Autism: What I Wish I Knew in the Beginning
Focus on Environment
If you can’t find a diagnosis, how are you supposed to treat them? Early in our journey we decided if we couldn’t identify the root cause, we could help isolate the impact. For that reason we turned to managing his environment.
We cleaned up our food choices limiting sugars, removing food dyes, and emphasizing real foods over processed options. We limited screen time and focused on consistency of routine. These simple actions enabled us to isolate behaviors and gave us clues to root causes we could discuss with practitioners.
Be Prepared for a Long Road
Our system is designed to intervene early . . . when there is a diagnosis. When there isn’t one, the action is on the parent to intervene.
I started where I noticed the biggest deficiency, which for my child was speech. From there, we relied on the expertise of each specialist we worked with to direct us to others for help. And each specialist, with their skills and therapies, helped unlock another piece of the puzzle and gave our kiddo helpful interventions along the way. It took us being referred through to five different specialist over the course of three years to finally find our diagnosis.
Prepare for Financial Tradeoffs
Therapy is expensive, and insurance does not like to pay for things, especially when there isn’t a diagnosis code. Very early on we learned that cash/self pay was the way to go. But it also meant that we had to make tradeoffs.
To do so, we worked with our providers on finding the best bang for our buck. For instance, we found that two weeks of daily therapy was far more effective than six months of weekly therapy. It was also cheaper.
Bring Your Kid into the Conversation
It is our responsibility to help our kids navigate the world. Part of that is being open with them about his or her differences and inviting him or her to the table when finding best solutions. There is power in the truth and power in knowing your differences so you can adjust how you live in and succeed in the world around you.
It took us five years to arrive at a diagnosis and find therapies that would help our kid. He is now a second grader that is thriving despite his condition.
If you are struggling with knowing there is something not quite right with your kid -– trust your gut and fight. You were given your child just as much as they were given you –- because you are the one that is supposed to be in your kiddo’s corner making his or her world better for your child to thrive in.
