9 Things Doctors Just Shouldn’t Say To A Special Needs Mom

“Where do all these diagnoses come from? Are your children adopted?”

I hung up the phone with the doctor a few minutes later and thought, “Well, add that to the list of awkward moments as a mom of children with special needs.

There have been so many questions and comments over the years that have floored me. From professionals. From folks who deal with children, even children with special needs, for a living.

While most of the doctors and therapists we work with have been and continue to be amazing, there are some comments, questions and moments that stand out as examples of 100% what not to say to a mom of children with special needs.

For reals.

Things Doctors Should NOT Say to a Mom Of Children with Special Needs

If you are a mom in a similar circumstance, you are nodding your head with a knowing

smile right now.

If you happen to be a medical professional, please know, I have nothing but respect for your knowledge, education, and position. I am so grateful for all you do to help families like mine every day.  And might I just say, it is in your best interest to avoid these types of personal statements with a mom who slept less than three hours last night and barely got her teeth brushed in order to make her child’s appointment with you.

9 Things Doctors Just Shouldn’t Say To A Special Needs Mom

Every single one of the following statements is from my personal experience over the last eight years.

 

1. “You need to try dimming the lights and no screens for an hour before bedtime.”

If a mom comes in with an eleven-year-old, who has several diagnoses that all affect sleep, and mentions that she feels like sleep problems might be contributing to behavioral concerns, this may not be the best response.

Out of respect for not only the mom but every other doctor that has come before you, please don’t.

Sleep hygiene is something that every single mom of a child who struggles to sleep has heard about from every single doctor since the well baby check-up at 4 weeks old.

We are well versed in sleep hygiene and best practices.

We have the list memorized.

For years we have tried to implement it and it’s still not working. That’s why we are bringing it up in our appointment with you.

 

2. “His BMI is too high. Is he drinking a lot of juice?”

No, he’s taking the meds. you prescribed. Every one of them has weight gain as a likely side effect. 25 pounds in three weeks is not the result of juice. We all know it. Please, just stop.

 

3. “He is probably not responding to the prescription because you homeschool.”

This actually happened. I was at a loss for words then, and I still am now.

 

4. “If you would just make him wear shoes, he would be OK in about two weeks. You just need to suck it up for a while.”

This, after describing sensory issues that have plagued my son since birth.

This, after mentioning that wearing shoes was the number one problem my son had with going to school.

My response? “He does wear shoes. He has to for school. But it is causing him distress. That’s why I am bringing it up.”

 

5. “He might need military school. It worked for my son.”

My son was eight at the time.

 

6. “Your son should be kicked out of this therapy program with behavior like that.”

In a therapy program designed specifically for behavior “like that.”

 

7. “He is too young for a bipolar diagnosis.”

From a pediatric gastroenterologist.

 

8. “If you could see his behavior on video, you would agree that he needs Ritalin.”

I am pretty sure I see his behavior all day every day.

Plus, I raised the concern about Ritalin because it has been known to potentially cause mania in children with bipolar disorder. This is not an answer. It’s just mean.

 

9. “If you were a warrior mom, you would be willing to try anything for your child.”

This, right before she said, “I accept all major credit cards for my exclusive autism supplements.”

 

I recognize that doctors may need to cover their bases and investigate issues surrounding every one of these comments. It’s not the topics themselves that create undue stress and disconnection with moms. It’s the lack of respect.

Rather than blanket statements and assumptions, or inappropriate questions with an obvious bias, special needs moms want someone who is on their child’s team. We want mutual respect, acknowledgment, and concern.

At the very least, we want someone who is going to help, and not make us feel worse. We also appreciate a little common courtesy and manners.

 

I think you’ll find that no one is more loyal and more willing to give referrals than a mom with a medically complicated child.

We are fierce about finding good care.

We can help each other.

Please, work with us. We need you.

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9 Comments

  1. So, so true!!

  2. Wow…..wow….and wow again Shawna!! Deffintly nodding and smiling as I read this!! Doctors, they can say the darnedest things, can’t they?!
    I know this too, I have had these things said to me by doctors. Sometimes it hurts a whole lot to have your integrity and dignity as a mother questioned by someone who is suppose to be highly educated when you are living this horror because that’s what it has been at times…sometimes it infuriates me….sometimes all I can do is laugh. Like the one time a doctor told me she understood and knew exactly what I was going through because she had a strong willed 2 year old at home. Trust me, I dream of just having a strong willed 2 year old compared! You are right….we are fierce about finding good care. We will go great lengths. And when we do find that good care we hang on to it tightly because we know how fortunate we are to have found it.

  3. Are you kidding me?????? Can’t fathom people saying this to you. You’re in the trenches every minute with these kids!! By the way, you are the definition of WARRIOR MOM. keep up the good work.

  4. Great post! Seems like this is a rite of passage for special needs parents. Looking forward to checking out your books and the rest of the posts. I also homeschool a teenager with autism and his typical brother and blog about it.

  5. Wow. Shawna, as a doctor myself, I’m appalled at these remarks, out of the mouths of those supposed to help.

    All I can say is that it’s shameful, and I’m so sorry you’ve had endure such condescension.

    Listening is the first, critical step to good care. Unfortunately the data show (actual studies!) physicians listen for an instant to a patient before interrupting to question or comment.

    Praying for encouragement for you. And for some wisdom for your clinicians.

  6. It’s hard not to feel belittled every time we are in the Emergency room, they treat me like a child and do not listen…we have his neurologist on speed dial and call her anytime we are on our way so that she can explain to them that my child is not typical in presentation…. the most recent time we spent an overnight we actually asked to be reassigned nurses because they would not listen….. it’s hard to be in a very stressful situation and then feel like people are being condescending as well

  7. Stevi Ferguson says:

    My kiddo has the opposite problem on #2. He’s been underweight his whole life – a lot of which is down to genetics (dad and I are both petite) – but also exacerbated by his sensory issues, demand avoidance, and low interoception (he doesn’t feel hungry until he’s HANGRY, he gets anxious about food, and resists being told when or what to eat) . The comments I’ve gotten regarding how to feed him, what to feed him, and how to handle it when he doesn’t eat…. YIKES. The first doctor I quit was his pediatrician, who was comparing him to malnourished children in Haiti – and that I was setting him up to be small because I wouldn’t force-wean him at age 3 (because apparently breastmilk has no nutritional value after 3 years !?!). Ummm, no.

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