Mixed messages

10 Dec

There’s this phenomenon that happens when your child is being evaluated for any sort of difference.

You are inundated with mixed messages.

Pelted by. Poked with. Swimming in. Slapped repeated by.

Mixed messages.

On the one hand, you’re told “Accept your child for everything they are!”

On the other hand you’re told “What’s the cure for your child’s issue?”

On the one hand, “Relax! God doesn’t make mistakes?”

On the other hand, lists of questionnaires from doctors asking you how you might have caused this during pregnancy.

One hand, “Your child is perfect the way they are.”

Other hand, “I could never handle a child with issues.”

And so on, and so forth, world without end, amen.

This is what I got for…oh…probably three years of Maura’s life. I still get it at times, but for three straight years or so, it was constantly there.

I was told to accept my daughter but cure her, because I shouldn’t really accept her as disabled. I was told to calm down, but that I wasn’t taking this as seriously as I could be, as I should be. I was told it was great that I was laid back, but good moms are Warrior Moms. I was told not to be dramatic about things. I was told how having a child like mine was too hard. I was told having a child like mine was easy. I was told she would catch up. I watched her fall further behind. I was told that everything had to happen by age five or else she’d be behind forever. I was told how that wasn’t true, that development could happen well into her twenties. I was asked “Was there anything that happened during your pregnancy that could have caused this?” in a dozen different ways. I was told not to give up hope. Evaluations hade her sound more disabled than anyone gave her credit for. I was told that I was the expert on my child. I was told that they knew what was best for her. I was told to trust my instincts while everyone around me told me how those instincts were wrong. I was told I wasn’t doing enough. I was told I wasn’t investing enough time in my child. I was told to take time for me. I was told they couldn’t help us.

I was told a lot of things. 

So many things. 

It’s amazing, the moment you say “I think there’s something wrong with my child.” how everyone comes out of the woodwork with an opinion on what you should be doing. Most of those people aren’t their to actually help though. They’re just there to plant a seed of doubt in your brain, which is already an acre of doubt and doesn’t need more seeding.

I don’t know when it stopped with Maura. Maybe when she developed epilepsy? People take seizures pretty damn seriously, and it’s something they know, and is real to them.

Maybe it’s when I was able to stop taking all the “advice” thrown at me. Like when one preschool mom told me the key to potty training was consistency, and I just needed to be consistent with Maura. I told her she could come over to my house any time to help out.

She never did.

But I knew she wouldn’t show.

It was all around the time Maura was four. A year into therapy for myself, three years, multiple tests, and MRI and EEG for Maura.

Three years of mixed messages being thrown at me, I was finally able to send a message to the world.

“I got this. I’m the expert on her. I don’t care what your opinion is. No, I’m not going to rub her down in essential oils because that won’t fix her brain. What’s on paper doesn’t matter, and doesn’t tell the whole story. She is who she is, and if you don’t like that, there’s the door.”

So to you moms and dads who are starting a journey of your own, be warned – there are many many many opinions out there. People will tell you what to do, how to do it, and what to feel. They will be everywhere, and they love to give their opinions unsolicited.

Here’s the thing – 

You don’t have to listen to them.

Just nod, smile, say “That’s nice, but we’re going to keep doing our thing, thanks.”

You do you.

Your path is your own, and you can hike it however you want.





[image description – My two daughters, both about the same height, walking through the woods, on a dirt path, the sun shining down on them]




10 Responses to “Mixed messages”

  1. sleepyfoxwrites December 10, 2017 at 2:42 pm #

    I’m so sorry you had such a difficult journey! How frustrating that must be. Thank you for sharing, and showing the rest of the world what it’s like.

  2. Lisa Bartush December 11, 2017 at 7:23 am #

    That’s is exactly how it went down for me too. I think even till my son was 5 and people just don’t get it and it’s almost sad when people finally realize what you knew along. Wwe knew Nolan was different and we couldn’t fix it. Other people just had to get there on their own. And it wasn’t my fault. I did the therapies. Some helped and others didn’t. He is thriving but has so much further to go. We got time!!! And there are planty of kids like Maura out there. Glad you reached out to inform people. And to those warrior Mom yes you are amazing, but don’t take too much credit for what your child did.

  3. GreatLakesWoman December 11, 2017 at 1:09 pm #

    Once again, your writing touches the heart. Keep on “doing you.” You rock.

  4. Angel of Anthropology December 11, 2017 at 1:29 pm #

    I am so guilty of this sometimes. But strangely it is only if I hear that a baby is teething. For some reason the fact I used Humphrey’s to soothe our kids becomes very important. I only say it once and I don’t press anyone to use it. I don’t even known if it is still around.
    People can’t seem to help giving advice or their opinion about many things.

    • Phoebe December 11, 2017 at 2:15 pm #

      teething advice is totally normal and usually welcomed. Because teething is a universal suffering we can all understand.

  5. janinmi December 11, 2017 at 2:33 pm #

    I salute you.

  6. tiffanyfisher7 December 11, 2017 at 5:40 pm #

    We are a year into our journey and I love this advice! I’m finding it to be true! One person will say he is who he is. The other will say don’t let him do that, get a behavioral therapist because it’s not socially acceptable. So we hear everyone’s opinions and it’s nice to hear it from someone on our side that we don’t need to take everyone’s advice. Thank you!

  7. oceanhayward December 11, 2017 at 7:04 pm #

    As a high school teacher who has worked with many teens and young adults with intellectual and physical disabilities, you got it right! You do you! I know there are all these so called “experts” and people who think they know better. I tend to be the only teacher at meetings for kids with intellectual disabilities and/or outbursts of rage who doesn’t have the so called “behaviour problems” in my class that these same kids have in other classes. Of course, no one asks me why, because “they” always know better. But I think it’s because my philosophy is just as you said, “you do you.” I don’t push kids to be perfect, and I don’t expect them to be perfect. If kids feel safe, they’ll thrive. Great post and I’m sorry about all of the assholes in the system.

  8. Bridget December 12, 2017 at 12:57 pm #

    Eight years before I stopped listening to everyone who said it was my poor parenting skills that caused my child’s behavior issues. Here I would like to point out, it was 8 years of zero outside help for the day to day parenting, yet so many, many comments and opinions on what I was doing wrong. A diagnosis of ADHD and a smart counselor who told me you can’t parent an ADHD kid like a neurotypical kid, it doesn’t work and it wouldn’t work, you need a new game plan. My new plan included not listening to anyone who wasn’t willing to babysit or spend the day with us seeing what life really is like with an ADHD person. Needless to say, when you start eliminating those who talk the talk but don’t walk the walk, life gets less complicated and my family gatherings are much smaller.

  9. StephsTwoGirls (@stephstwogirls) December 14, 2017 at 6:09 pm #

    Yep, understand all of this. People don’t tend to make suggestions to me any more… maybe it’s because I’m so damn sure I’m doing what’s right for our girl it feels like I have a sign daring anyone to challenge me tattooed on my forehead 😀

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