How To Be The Voice Of Your Special Needs Child

My child’s doctor never tells me what’s next. I tell him. Or her. Or them. Or, if I’ve fired them from his case, the new set of “them.”

They don’t dictate what happens to him, because they didn’t carry him, love him before his first breath, spend hours in pain trying to birth him, or spend days, weeks and months in even more pain worrying about him.

The first month of trying to figure “everything” out, I nodded ferociously and said very little when the barrage of specialist came raining down on our sad little mint-colored NICU room. These are highly specialized, important, well-educated physicians, my head told me. They know what they’re doing.

It became disgustingly obvious that was not the case. And, the more I was repulsed by their lack of attentiveness and eagerness to help my son in a timely manner, the angrier and more frustrated I became. “First, do no harm,” includes being ignored while hospitalized.

I became demanding. And shrill. And unpleasant. And downright rude. I feel awful for the nurses who were stuck with me for the second consecutive month of my little boy’s hospitalization, because I think I spent all 30 days of it jumping from furious to inconsolable. There was no in between. Either I spoke to you like I wanted to damage your soul, or I was speaking with tears running down my cheeks.

The third month, the final month, was different. I had a game plan. And a purpose. And a backbone.

1) I fired doctor’s from his case. If you didn’t speak to me, or my son, in a caring, calm manner that led me to believe you cared about our emotional and mental well-being, or brushed off my concerns as some idiot parent with too much time to browse Dr. Google, you were gone. GONE. Next.

2) I had doctors explain their diagnoses to me, sometimes several times before I understood it. Then, I wanted to know why. What was their reasoning? Were there alternatives? Why this diagnosis over that one?

3) Then, I hopped on Dr. Google (bite me, jerk doctors), and researched my butt off. Every medication, every clinical trial, every medical forum… I read and read and read, which was easy to do spending 24 hours a day in a 12×12 foot room.

4) Then, I went searching for other parents. Facebook groups and pages, Yahoo! forums, baby website chat rooms; anywhere. Anywhere there were parents talking about their kids with the same diagnosis as mine. I needed to know how they were diagnosed with it, when they received the diagnosis, what the criteria was, what they were told could be done about it, and about 10 million other questions.

5) Then, I would speak to the doctor again. I would discuss what I had read, and talk about other parents’ stories. Talk about what those parents had said worked for their children and asked about it for my son.

You have to know everything about your own child, inside and out, and then educate yourself on the things the doctors tell you. Doctors aren’t gods, even though some of them think they are. Don’t get me wrong, we were fortunate to have a few really awesome doctors that wanted our input and questions, encouraged us to research things, and did some researching themselves. Those are the doctors that hug you after a positive outcome. Those are the doctors you never forget.

But, until you get one of those doctors, you have to be your child’s voice.

Listen to your gut, it’s never wrong.

Be the pain in their ass. It’s your child, you’re allowed to be a pain in the ass when advocating for them. I encourage it.

Never let someone tell you to stay off Dr. Google. Knowledge is your greatest source of power, and your voice is your second greatest.

Take back the control.

5 thoughts on “How To Be The Voice Of Your Special Needs Child

  1. Jordan Walsh says:

    You’ve said it well. It took me a long time to find the courage to go dump a doctor and realize that despite how they appear they’re not always right. We are out children’s best advocates.

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  2. Katie says:

    I don’t think it is bad to do research and find out more about your health issues (or your child’s), but to think that your Googling is going to teach you more than doctors’ years of med school is ridiculous. Anecdotal advice from parents is fine, but not when you demand that some parent off the internet knows more than your own doctor.

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    • Rachel Engel says:

      I dont think I said to demand that a parent knows more, but that their experiences living with a certain disgnosis and knowing what helped/made things worse, would be worth talking over with the doctor.

      Also, just because they’re a doctor doesn’t mean they know everything. They kept pushing my daughter off, telling me she had muscular torticollis, and to keep doing stretches. After several long weeks of Googling, I disgnosed her with Benign Paroxysmal Torticollis, a neurological condition. Her pediatrician rolled her eyes at me, but wrote a referral for a Pedi Neurologist. I took her, brought my research, my videos and pictures of her head tilting different ways each time, and, yes, anectdotal evidence from parents in an online forum. Guess what? The doctor walked away, researched for 25 minutes, came back and agreed with me. He had never heard of it, but he concluded that she fit the profile exactly.

      So, yep, it does pay to do your own research. My son has so much wrong with him, so many rare things, I can’t guarantee doctors are going to 100% understand things. If they do, great, but I won’t be able to notice their ignorance and get someone who understands unless I understand myself.

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  3. Anna says:

    Oh, I remember the swinging between furious and inconsolable. I think I was much more present and demanding than a lot of parents while my daughter was in the hospital, but now that I’ve got distance from the trauma of it, I know I could have been even more direct. My mama bear reflex has grown a lot stronger since those first weeks, and there’s no way the doctors would now get away with not telling me every shred of reasoning behind their decisions.

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