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Signs of the Times

Thursday afternoon was an absolute disaster.  I had been looking forward to celebrating “Cinco de Mayo” with my family that evening, had planned a great Mexican feast and had even found the blender for Margaritas when I got the phone call.  It’s the kind of phone call I personally dread like no other.  Matthew, my nearly-nine-year-old, had apparently ingested something that showed up as contrast on an X-ray.  He had not been given barium nor anything loaded with magnesium such as Pepto-Bismol or another stomach acid reducer.  I could not account for him eating anything unusual, so, unfortunately, his pediatrician recommended that I take Matthew to the Emergency Room.  Oh joy.  Here comes the fun.

My Matthew, the joy of my life, is profoundly autistic.  Matthew’s symptoms are severe, including aggression and fecal smearing.  Matthew is non-verbal for the most part and his behavior is unpredictable, as he frequently becomes frustrated due to difficulty with receptive language. Noise and fluorescent lighting easily overwhelm Matthew.  As one might imagine, a trip to the emergency room can be a terrifying experience for a child on the autistic spectrum.  Matthew keenly remembers past trips to the ER and panicked the minute we walked through the doors of the hospital.

I’m fortunate enough to have a personal attendant for Matthew.  What would I do without Chelsea?  However, I could have used four other pairs of hands this particular afternoon. Matthew did not want to have his weight checked.  He squirmed the entire time the nurse was taking his blood pressure, threw down the stethoscope as she was listening to his heart and lungs (I can’t say I blame him.  The woman was speaking very loudly and slowly.  It took everything within me not to shout “He has autism.  He’s not deaf.  He just has trouble speaking.”  Instead, I lowered my eyes and sadly shook my head.)  Matthew responded by head butting me as I was describing why we had come to the ER.

I gave Matthew some toys to play with but they were of little use.  The room we were in was very bright, lit with fluorescent bulbs (people on the spectrum can actually see the strobe in fluorescent lights and some types of computers).  I had to tell the nurse Matthew’s story, then the resident physician, and finally the doctor.  After about fifteen minutes, Matthew was in full “nuclear meltdown” mode.  He was screaming at the top of his lungs, pulling Chelsea’s hair, biting his wrist and throwing toys.  Had I not mentioned to the staff that Matthew is on the spectrum?  I most certainly had, but there is no protocol for treating children such as Matthew.  Apparently, it’s a one-size-fits-all approach.

I got up, walked to the sliding door, looking for something, anything, to soothe Matthew.  I spotted it!  A wagon!  Thank heavens!  I didn’t even ask permission to use the wagon, just walked to it, grabbed it, grabbed Matthew, and started walking him around the hallways of the emergency department.  We must have walked around for 45 minutes or so when we were finally called to the imaging department.

An X-ray tech walked us to one room.  Oops, wrong room.  Matthew screamed and bit his wrist again.  We found the correct room and Matthew was hysterically chirping, screaming, biting his wrist.  He refused to cooperate, in spite of both Chelsea and I (we’re both around 5″6, 130 pounds, mind you) attempting to hold Matthew still.  Matthew is 4’3″, weighing in at 63 pounds, and his attendant and I could not hold him still for the X-ray.  Finally after several “Hold his head still’s” being shouted at us by the very cross and less-than-tolerant-sixty-something female technician, another technician, more tolerant and much wiser, popped in to help.  Within five minutes, we were finished.

Another hour passes by and we finally receive the results.  Matthew is severely constipated, and he likely ingested too much cheese or milk (calcium can appear as contrast on an X-ray, would have been nice if his pediatrician had known this in advance).  I am told to purchase Miralax and give it to him for three days.  20 minutes later, I’m now exhausted beyond comprehension and shaking, I receive Matthew’s release forms to sign and we go home.

Thankfully, my wonderful husband has prepared the feast and has Margaritas waiting for me.  I give Matthew his medication and Chelsea feeds him his supper.  I wonder how on earth other mothers survive events such as the one I had just experienced, how a pediatrician could not know about calcium and X-rays, and why on God’s Green Earth would medical professionals, especially those that specialize in children’s health, could miss the obvious signs of autism?  Perhaps it is because there is no requirement that such people be made aware of such signs.  Because I always give people the benefit of the doubt, I conclude that lack of information is to blame and, that had such information been made available, different decisions might have been made regarding Matthew’s treatment.  I make a mental note to have a discussion with my son’s pediatrician about this very topic.

Last month was Autism Awareness Month.  To honor awareness, I am officially making all people, particularly those in the medical field, aware of the signs of autism by sharing the following information:

  • The child does not respond to his/her name.
  • The child cannot explain what he/she wants.
  • Language skills or speech are delayed.
  • The child doesn’t follow directions.
  • At times, the child seems to be deaf.
  • The child seems to hear sometimes, but not others.
  • The child doesn’t point or wave bye-bye.
  • The child used to say a few words or babble, but now he/she doesn’t.
  • The child throws intense or violent tantrums.
  • The child has odd movement patterns.
  • The child is hyperactive, uncooperative, or oppositional.
  • The child doesn’t know how to play with toys.
  • The child doesn’t smile when smiled at.
  • The child has poor eye contact.
  • The child gets “stuck” on things over and over and can’t move on to other things.
  • The child seems to prefer to play alone.
  • The child gets things for him/herself only.
  • The child is very independent for his/her age.
  • The child does things “early” compared to other children.
  • The child seems to be in his/her “own world.”
  • The child seems to tune people out.
  • The child is not interested in other children.
  • The child walks on his/her toes.
  • The child shows unusual attachments to toys, objects, or schedules (i.e., always holding a string or having to put socks on before pants.)
  • The child spends a lot of time lining things up or putting things in a certain order.

(Source: www.autismweb.org)

Changes need to be made regarding how those on the spectrum are treated in stressful environments such as an emergency room or a doctor’s office.  I have requested from my own pediatrician that Matthew not be placed into an examination room until the doctor is ready to see my son.  If a protocol were put in place in hospitals, doctor’s offices, emergency rooms and urgent care facilities to deal with children like my son, the world would certainly be a happier–and healthier–place; at least for my son, other families, and myself affected by autism. Please take the time to learn the signs.

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BOLD Nebraska
208 S. Burlington Ave., Ste 103, Box 325, Hastings, NE 68901