When Doctors and Therapists Won’t Listen to Your Sensory Concerns

“You’re one of those stupid, young mothers who think they know more than the experts.”

I will never forget the biting words of the crockety pediatrician, as he tried to intimidate me (in front of my mother-in-law nonetheless) into doing things his way with my first born son. 

He belittled my intelligence, he ignored my intuition, he was a jerk, and he lost a customer.

Sadly, it’s not rare for the medical experts to shrug off our sensory concerns and leave us feeling like we’ve hit a dead end. 

What Should You Do When Doctors and Therapists Don’t Listen to Your Sensory Concerns?

Keep a Record

The first piece of advice I always give to parents when they’re seeking a sensory diagnosis or have an additional concern to bring to their medical professional, is to keep a written record. Nothing will get you dismissed more quickly than just have vague hunches and worries without specifics. 

Pay attention for a couple weeks to sensory behavior.

• Record the event and the specifics of the behavior (head banging, throwing things, plugged ears, etc.)
• Write the duration (45 minute meltdowns are far more alarming than a 5 minute one)
• Note any lead up factors (like you had a late night the night before)
• Describe what finally ended the meltdown (only swinging on the swing helped him start to breathe slowly)
• Thankfully not every sensory behavior is a meltdown, so be sure to record the habits and tendencies you see as well. (Hair twirling, chewing shirts, number of foods they will eat, etc.)

I find that when you accumulate this sort of detailed information, most medical experts will take you seriously and will point you in the right direction. 

Insist They Explain Themselves

Most of us don’t have our medical degrees, so it would be wise for us to learn from those who have spent years learning the ins and outs. But don’t let them hide behind those degrees. If your doctor disagrees with you, insist that they explain themselves UNTIL you understand and agree.

My boys have a VERY rare, non-sensory related brain condition. When we first found out there was something wrong, our neurologist had zero patience with my questioning his diagnosis, insisting I just accept his explanation. I reached out to a Facebook group for help in understanding what I was being told. One stranger gave me the courage to continue to pester. She told me that a doctor’s job is to explain the complicated things to parents so that the parents can make informed decisions. She told me to not let it rest until it all made sense and sat well with me. I wish I could find that Facebook stranger and thank her. That advice saved my boys’ lives. 

Find a New Doctor

Don’t be afraid to go a new direction. Remember that unfortunately, the medical field is a business and you’re the customer. If you’re not satisfied, go somewhere else. 

There ARE wonderful medical professionals out there, but it may take some time to find them and build your support team. 

If your doctor doesn’t respect your intelligence and intuition, move on and find one who does!

Get Outside the Box Help

While it has it’s pros and cons, the internet is a wonderful place to learn about sensory issues and be supported by a loving community that “gets it”. While I definitely advise getting local medical experts to oversee your child, you don’t have to twiddle your thumbs in the meantime. 

• Get Educated There are tons of sensory bloggers who write and share their perspectives. Learn from them! Follow them on social media, read their old blog posts, binge on their youtube videos.

  If you’re serious about understanding SPD, check out my course Sensory Parenting 101. (One parent told us “Your course is like a one stop shop of information. It’s so valuable to go to find answers and suggestions to help me be able to understand what my daughter is experiencing. It also helps me not feel crazy! You guys know SPD better than anyone!”)

• Find Your Tribe We have an AWESOME free private facebook group full of parents with loads of experience!

Advocate Like a Mother