Fellow autism mom Cathy Jameson does it again. Last year she shared her son Ronan’s story here. Cathy is an amazing writer and I am thrilled that she wrote this piece for me. But even more than that, I am awed and inspired by her tireless devotion to help other parents. Recent posts (here and here) have been about what we autism parents wish we knew when our children were first diagnosed with autism. Cathy’s post gets to the heart of what we all wish we knew BEFORE the diagnosis. Preach, sister!
Oftentimes, parents are told that they know their child best. Guess what? They usually do! What a gift it is for parents to be so in tune with their child’s every need. As mom to five children, one of whom has special needs, I have heard that statement several times over the last few years. I’m flattered when it is said to me and appreciate the genuine praise that comes with that statement. I am confident now that yes, I do know my child best. But I haven’t always felt confident in the past. That’s why, when I’m asked what’s the one piece of advice I want to share with another parent it’s to trust their instinct. As a young mom, I didn’t do that.
Oh, how I wished I had.
When we don’t trust our natural instinct, or when we talk ourselves out of trusting that instinct, we end up trusting someone who may not have our child’s best interest at heart.
I’m grateful to be able to share my son and our family’s story now and encourage parents to not just trust their instinct but to also read everything they can. Read. Ask questions. Read more, lots more! Ask questions until every single question is answered. If it’s vaccines they’re worried about, or if it’s autism that has them concerned, parents can start investigating those topics right away. It would be ideal if they could seek guidance from their provider while they’re investigating, but parents can begin the process on their own. They can know what typical childhood develop looks like and watch for developmental changes. They can learn the red flags and also be mindful of the signs and symptoms of autism or other childhood disorders. In starting to educate themselves, parents can investigate the rising childhood epidemics, and they can begin to learn how to prevent them.
Thankfully, prevention of some of disorders is possible.
In a piece I wrote years ago, l shared that, “Easily I can now recognize the signs, the symptoms, and the red flags now. But as they were happening, and even after bringing some of them to the attention of our providers? I was blind. I was uninformed. I was too trusting. I was too trusting not of my mother’s instinct, but of “the system” and of those who ran it.” When I finally brought my concerns to our providers, I got shut down. It’s not the vaccines. It isn’t autism. He’s a boy. They develop slower. Quit worrying, Mom. He’ll be fine.
But I did worry.
Because I knew.
And I was afraid.
Had I understood the basics, I’m sure I could have avoided how complex my child’s situation currently is. Before I even stepped foot into a well-child visit, I could have taken time to read something about the topic. If I had, I’m sure I would’ve been more informed. Had I been more informed, I could’ve been a better advocate. Not being informed lead to making poor decisions, which, now that I know what I know, included going against my mother’s instinct.
I can’t go back in time to change the decisions I made. But I can gently encourage new parents to know and do much more than I did. Since there’s a way for others to avoid what I did not, I tell parents exactly that. I let them know that, if I could do it all over again, I’d do things so very differently. I’d read more. I’d ask more. I’d learn more, and trust myself more. Too many times, my mother’s instinct screamed NO!, but I sheepishly said yes. I can never let that happen again. So, young moms and dad, please do what I didn’t – read, ask, and always, always trust your instinct. I have a feeling that you’ll be grateful that you did.
Cathy Jameson is passionate writer and autism advocate. She is the mother of five children, including Ronan who has autism and severe medical issues. She is a regular contributor to Age of Autism and The Autism File Magazine, she contributed a chapter to Autism Beyond the Spectrum, and she has written for numerous parenting, holistic wellness, and health publications. She also blogs at CathyJameson.org about Ronan, autism, and parenting a special needs child with typical siblings in the hopes that sharing her experiences will help other families in similar situations.