Working with the Medical Team

The discussion of medical procedures seems to come up very frequently in many of the Autism communities that I am in.  Parents of autistic kiddos try to share information as much as possible so that their child can have a good medical experience.  

I have a unique perspective on this issue as I am the parent of an Autistic girl, I am a pediatric nurse of 25+ years and I sedate children routinely for sedation procedures (MRI's, EEG's, bone marrow aspirations, lumbar punctures, etc.).  It's a trifecta of information!!  

If you're reading this and looking for some helpful info, please know that my HIGHEST recommendation is that you discuss any of these tips and tricks with your doctor and medical team.  Remember, YOU are part of that team as well and you know your child best.  That's my little disclaimer.  I'm not the "be all, end all" and have not conducted a double-blinded study.  I'm just a mom with some info that I am happy to share.




I would love to tell you that all medical personnel have endless information on autism and sensory disorders and can easily navigate through most issues.  However, I cannot tell you this at all.  I can tell you for certain we don't have all the information we need, because I was that same nurse.  I have loads of different understandings now because when my daughter was diagnosed, I read and researched everything I could get my hands on.  There was a ton of information I didn't know.  A pediatric nurse for 27 years and I couldn't tell you a thing about sensory processing disorder.  I have a whole different perspective now.  Most of us don't understand the connection between autism and the sensory issues. Because of this, I think it's important that as parents you're able to advocate for kiddos by knowing both languages.

So I've come up with a few tips that I hope will help your kid should they ever require sedation and anesthesia or be in the hospital environment.

• Just know you may have to explain a few things.  Please be patient, many of us are trying to bring our colleagues up to par, but it's going to take some time.  I always start with, "She's a sensory SEEKER, not avoider."  That begins the dialogue and complete understanding that Autism is DIFFERENT in every kid.
• Understand what a Child Life Specialist is and does.  Most Children's Hospitals have them on staff.  And many smaller hospitals are now seeing the benefit of having one.  The Child Life Council can introduce you to these services.  CLS's have many ideas, tips and tricks and they DO understand sensory stimulation and sensory issues.  My own personal nursing practice in pediatrics is not complete if there is not a CLS involved in procedures.
• Every parent (whether your child is neurotypical or autistic) needs to understand that laying down in the "crucifix position" and having a procedure done to you is OVER.  We have stopped doing that since the late 1980's and with damn good reason.  It's terrifying.  Would YOU want that done to you?     There are times that yes indeed what have to hold a kid down to complete a procedure where sedation is not an option (like an IV start, insertion of a foley catheter) but it is a LAST resort, not the first thing done.  And there is much prepping down beforehand with parents as well as with the kiddo.  
• How does that happen?   (see my Child Life Specialist comment).  There are also creams that can be put on the skin to numb it so the poke is not felt (that goes for vaccine shots too).  There are methods to hold a child so it's not so scary.....chest to chest with a parent or cuddled up on Mom's lap.  I know nurse friends that have changed offices of a beloved pediatrician because the nurses told her "no, you can't hold while we do the shot...it's not safe."  That's simply not true.  Spend time understanding what's called "positions of comfort" and you'll find one that probably will work for your child.
• When you are being sedated the worst parts are going under and coming back up.  I call it "going down the rabbit hole"  Your brain and body disconnect and it's a very uneasy feeling.  It's 200X that when you are not neurotypical or have a sensory issue.  Weighted objects can help!  A weighted blanket or a lead apron from the X-ray department works amazingly well to keep a kiddo feeling safe and secure and not so "floaty" when coming back out of the rabbit hole.  Remember, lead aprons cannot be in MRI suites but they can be in recovery. 

Floating down......

• When my daughter had her sedated MRI, I requested she be put directly on her beanbag chair from the MRI table.  The beanbag would give her some good sensory feedback.     I also explained that if she was having airway issues and couldn't be in that position immediately, I understood.  They told me as soon as they felt she could be in that position safely they would do it.  When I got to recovery with her, we then put the lead apron on her torso and legs.  She woke up without one tear and seemed to be waking up from a nice long nap.  There was zero stress.

MRI day -laying on bean bag and lead apron on legs

• Most sedating physicians and anesthesiologists (if not all), give a mild sedative orally prior to any beginning of the actual sedation.  Typically, a drug called Versed is used and is safe in the pediatric population.  The beautiful side effect of this drug (besides the one you want to make your kid feel woozy and drunk) is amnesia.  So, even if something is scary or "not so fun" the Versed puts cheese-holes in your memory.  It's a nice side effect.  We really want kids to have good experiences so they can build on those experiences.  Each kid brings a "baggage of experiences" with them every time they encounter medical professionals.  We really want that luggage full of good stuff and keep the bad stuff a distant memory.  
• Behavior changes may need evaluation from your doctor.  This is especially important if the kiddo is non-verbal.  Nea stims mostly in the evening time and it usually is spinning with an occasional head crash into the beanbag or couch.   Recently, she started banging her head much more frequently than usual and during an OT session she cried during swinging.  Those things are off the charts for her.   If her behavior was changing to include more headbanging, then her OT and I would deal with that.  But before we went down that road I wanted someone to look in her ears.  Your vestibular system (originating in your inner ear) is a sensory system.  If it's whacked out....yowsa.  In fact Nea did have fluid in her inner ear.  After a week's worth of an OTC decongestant...the head banging subsided.  
• These same notions apply when it comes to working with a dentist.  A pediatric dentist who specializes in special needs is worth their weight in gold!  If you do not have access to that resource, than have a discussion with the dentist prior to the appointment.  We use a lead apron (found in dental offices of course!) for teeth cleaning and flossing.  It works.  Lots of websites are out there with social stories for dental visits as well.

Communication is key.  And yes, for now you're going to have to help educate the medical professionals as you go along the way.