To My Son’s Doctor

I hung up the phone with tears in my eyes.

The office had not even sent the paperwork yet.

Two weeks…wasted.

Two weeks of my son being in increasing pain, complete overload, and struggling to participate in everyday life.

Two weeks of waiting by the phone for the specialist to call and schedule an appointment.

Two weeks…gone.

Why?

According to the gal on the phone, “Jenny’s been working on it.”

It’s a fax. It’s a fax with test results and documents that I hand delivered to the office two weeks ago. Even if it requires an extensive cover sheet, does it really need to take two weeks, Jenny?

Autism, Sensory Processing Disorder, Chronic Illness

 

Four years ago, my son melted down in the waiting room, like for reals melted down. We’d been there for approximately an hour, with other children crying, playing, throwing toys and being kids – my son withdrawing further and further into himself to escape the sensory overload. I tried to distract him with your fish tank, the book we brought, a treat. But an hour is a long time for a little boy with autism. It is also a long time for his momma.

When the nurse finally called his name, she shamed both of us for his behavior, saying, “I guess someone needs to learn how to be patient.” I smiled a weak smile and begged her with my eyes to just.stop.talking, all the while thinking, “If you think that was bad, just wait ’til you see what happens when it’s time for his shots.”

To My Son’s Doctor:

None of this was you, specifically. It was your staff. It was Jenny. It was the appointments booked prior to ours that day. It was the fax machine.

And although I think it is extremely unprofessional, it doesn’t matter.

 

I am willing to overlook all of it.

Although I think you may have some serious personnel issues, not to mention office management and paper flow concerns, my son needs you more than any of the other people in your office.

You make or break us.

You either take him seriously or not.

You either listen to my concerns and respond or chalk it up to one more overbearing, hysterical momma.

You either affirm us or choose to show us how much more you know.

The best doctors I have known, always, always, always choose the first option.

So before I answer the obligatory, “What brings you in today?” please allow me to first share this…

It is a delicate dance, the dance of a mother in the doctor’s office. I know you have power when it comes to my son, lots of it. You decide what happens next, and you decide it in about 7 total minutes.

I know it is really important for me to make a good impression, to be credible, and to seem educated. I also know it is really important to not seem too credible, too educated, or too on top of it. It’s worse when you think I’ve done a little too much internet research and possibly jumped to too many conclusions. I know this. And so I dance.

The truth is, I am so grateful for you and the hope you bring. I am thankful that you worked so hard in medical school, and in all that is required to be a doctor, so that my son can benefit from your knowledge. I am thankful I live in a country where he has access to the care you provide. I have so much respect for you.

I also spend days getting ready for our visits. I prepare my son, in an effort to avoid meltdowns over things being unfamiliar and not going as planned. I prepare myself, thinking about how best to communicate my concerns, writing down talking points, and planning to get up a little bit early the morning of the appointment to actually take a shower, put on make-up, and wear pants that would not be ideal in a yoga class.

The truth is, I lie awake the night before, and I pray that I will communicate well, that my son’s behavior will not be a distraction, and that you will have the wisdom and discernment to help us figure out what to do next.

You may not know this, but as much as I want an answer, I am OK if you don’t have it. I am OK with you saying, “This is unusual. What do you think based on your daily experiences with him?” or “I need to do some research on this – his symptoms are not in line with a typical diagnosis.” Please do this! Please do this rather than dismissing him and his needs. Do this rather than assuming that everything must instead be fine.

Because it’s not fine. It hasn’t been for years.

I made this appointment and suffered your office staff and the grumpy nurse because I know that he needs you. Therefore I need you.

I am so grateful for your time. I am so grateful for your expertise.

Now, please let me share what brings us in today…

 

13 thoughts on “To My Son’s Doctor

  1. You seriously hit the nail on the head for me with this. Especially the dance and being okay with admitting it’s unusual. I’m not sure for you personally; but somewhere in there, for me anyways, is the fear of “mother may=munchausen syndrome” being scribbled in the corner of the file. Hugs being sent!

    1. Thank you so much for your kind words and support. I am so grateful to have the constant reminder on this blog that I am not alone in all of this.
      Love,
      Shawna

  2. I’ve been there – both with respect to my own health and my daughter’s. It’s hard to feel so powerless. You’ve captured the “dance” perfectly. We’re starting to learn and take charge of our own health, but most doctors aren’t adapting. The number of times I’ve wished my doctor would be strong enough to admit that he doesn’t know what’s wrong with me, and needs to do some research, rather than throwing a diagnosis at me after 3 minutes that I know is impossible, given my symptoms – it’s maddening…. the number of times I’ve wished my doctor would respect me and treat me as an intelligent human being, rather than a hysterical female… thank you for this post.

    1. I am glad I am not the only momma who knows this crazy “dance”. I was a little worried in writing this that I might be the only one. I am grateful for your sharing your experience as well. 🙂
      Love,
      Shawna

  3. Oh, how true is your blog. Been there, done that & bit my tongue many times. When I insisted on my son getting a 2nd opinion from a neurologist the guy asked me why I wanted a 2nd opinion as the other guy is at the top of his field. So I told him I didn’t appreciate being told, “it’s a lack of effort on his part”? How can it be a lack of effort when a perfectly healthy child suddenly had to have a g-tube because of aspiration & the guy said, “he did it on purpose.’ Excuse me, I don’t need to tolerate that. AND if they just don’t know just say so. I respect doctors who will admit they are not gods. Now 2nd opinion did more tests & recommended considering going to Mayo or Cleveland Clinic as he didn’t know, but also did not think we needed family counseling to understand that this child was ‘pretending’ & how to deal with it. Grrr. You are a hero as all most of us with Special Children. “We do the best we can & it is important for us all to know we are not alone.

    1. Thank you so much for sharing your experience and for your kind words. I think you are dead on accurate!
      Love,
      Shawna

  4. I’m almost jealous of you. Not because of your situation, I’ve got that too, but because you can verbalize everything I never could. I love reading your blog. Thank you Thank you Thank you!!!!!!!!

  5. Absolutely!
    But….the treatment by a Dr.’s staff should be helpful and positive. They will not improve if these failures are not brought to light. Speaking from experience, most Drs. have no idea how their front office is treating patients. Share your experience.
    Here’s what I do, call ahead. Dealing with little humans is unpredictable, staying on schedule is a challenge. Just before you leave for your appointment, call and ask if they are running on schedule. Most offices don’t want a full waiting room any more than you do and will tell you to come as scheduled or a few minutes later.

    1. Thanks for the ideas, Christi. This is actually not the way it typically has been. These are two examples of the stuff we have had to deal with, but most of the time, they are wonderful.

  6. Long ago, when I was in law school, I saw my Constitutional Law professor wearing a coat and tie — unusual for him, so I asked why he was dressed up. He said he had an appointment with his oncologist, and he’d found he got taken more seriously when he dressed professionally. That blew me away — if even a law school professor has to work at getting his doctor’s respect, then what hope is there for the rest of us?! So many of us doing some kind of “dance”!

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