Advice from mom of special needs child falls on deaf ears

6 years ago
This article was written by a member of the SheKnows Community. It has not been edited, vetted or reviewed by our editorial staff, and any opinions expressed herein are the writer’s own.

Today while we were getting ready to go to a birthday party for an autistic child who plays on my son's special needs baseball team, I was reminded of something that has been particularly painful here and there over the years. And the thing is, I'm not sure if what I think is happening is actually happening, or if I'm being too sensitive. If I am being too sensitive, that would be a new thing for me.

My son, Max, is quite delayed and has apraxia, which is an inability to form words. Max is 9, and the apraxia is a recent diagnosis. Max (our only child) developed normally, but then stalled out when he was 4.5-5 months old. We noticed this because I was part of a moms' group, and all of the babies were born within a month of each other. We met weekly and talked about and witnessed miletstone after milestone. When all of the other kids started crawling, Max wasn't going anywhere, etc. 

So, here's the thing that hurts: As soon as it was apparent that he was behind, no one listened to my parenting advice. We'd talk about what to do when kids wake up at night, or how to get them to eat, how to cure diaper rashes, and various other topics. My suggestions were always met with a flat "hmmm" or even silence. No one ever took my advice. At first I thought maybe I just didn't fit personality-wise, but it has happened again and again over the years with different groups of people. 

I had one friend whose daughter was a year younger than Max. We were close friends... they were in the waiting room when Max was born, were were there when their daughter was born. They almost made a point to do the opposite of whatever we did with Max. 

And over the years when I've meet young mothers and they've asked for advice, my advice is almost always met with that flat "hmmm". 

When it comes to raising kids, we are as normal as they come... we follow the instructions on the Tylenol bottle, we don't give him cold medicine, we've never smoked. I have never offered advice that could be considered "out there". We did formula feed and we do use some alternative therapies like acupressure because they work for him, but those are personal choices and we would never push those on anyone else.

So, it has always seemed to me like people are afraid that if they do one single thing that we did with Max, their children will end up with special needs. I swear some people who ask for advice do so because they want to know what NOT to do. They don't understand that he just is who he is... it's not because of anything we did. And, in many ways, he is a typical child: strong-willed and opinionated, and can't be bothered to take time out from playing to use the bathroom.

I know that people take the advice they want to take... or not. And I don't think the advice I've offered is any better than anyone else's. And, maybe I'm projecting this on everyone. Maybe I have the problem. It just doesn't feel that way. 

Any other special needs moms feel this way?

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