Illness in the Sensitive Child: Tales from the Hospital

Its amazing to me that even in a place like a hospital emergency room, surrounded by people in the medical community, I found myself explaining Sensory Processing Disorder.

JC was admitted to the hospital due to dehydration from a virus.  He had been vomiting blood for hours by the time we were seen.  For a child who doesn't like to have certain textures enter his mouth, having them come out of his mouth is quite unnerving.  He was so weak and frail when we were checked in that he couldn't put up much of a fight until the needles came out.  I am going to break it down step by step and explain what I witnessed and what I think he was experiencing:

1) They secured the rubbery tourniquet around his arm and poked around for a vein:  JC began screaming at the instant that the tourniquet began squeezing.  Often for children with SPD touch, textures, pain - anything - can be felt more intensely than for others.  So just this squeezing along with his hand going numb created quite a disturbance in body.   The nurses tried to reason with him about the next part.  "I need you to be really still OK?"  I don't know any 2 year old that would understand, much less listen to that, and especially a child whose heightened senses in a traumatic situation have left him unable to listen and reason.  I tried to explain, "He has a hard time understanding in situations like this". 

2) The needle stick: Well, no one likes that part. But for JC, the pain didn't stop after the needle was in.  It was as if he felt every pulse of blood that they removed.  He screamed and cried, his body tensed and shook with frustration, and he squirmed and kicked the entire time.  In most cases, once the needle is in - the pain stops.  But for JC, it seems to linger and even become worse as the needle stayed and the vials filled.  And unfortunately, they had to do this three times because the veins were not cooperating (and neither was JC).  He hated being held down and the intensity of the emotions, anxiety and over-sensitivity to the touch of everything going on was impossible for his body to process.  He was pitifully crying to me "Mommy, 'a' da'" (all done).   The nurses kept explaining to me that "this part doesn't hurt him".  I finally snapped back, "he has Sensory Processing Disorder - Everything hurts him!".  They weren't trying to be inconsiderate - they just didn't know.  And afterwards, they actually cared enough to ask me more about it.  Bonus points for them!

3) Once the agony of the needle stick and the blood draw was over, the IV was attached.  This part was less aggravating, but likely it was because he was exhausted.  But the tape, the board to keep his arm straight, and the wrapping around the board and arm combination were too much for him.  He immediately began pulling and tugging and finally gave up and accepted it when I began pretending as if he were a robot with a stiff metal arm and a cord that plugged him into the wall.  Whew!  That did the trick!

4) The move out of the ER and into the room was fairly well accepted except the elevator ride. The feeling of suspended movement didn't sit we'll with JC and I had to keep him from climbing out if the bed to escape.  Once in the Room the beeping of the IV pump, the dripping of the fluid, even the fact that the TV was on the wall but the sound was coming from behind his head were all very unsettling. But at 1AM he was exhausted and was ready for sleep. It was a restless night with several episodes of waking. No one sleeps well in a hospital. 

We managed to make the best out of the situation. The IV pole became a train, the walks down the hall helped him understand where he was and the bumble bee bulletin board at the nurses station became a focal point to ease the cabin fever.  The first day was filled with confusion, fear, meltdowns and frustrations. Each time the nurses came in to take his vitals or change his IV bag, he would cling to me and cry.  But it did get much better as he started to feel better and as he became accustomed to the new situation. By the last day he was holding his arm out for the blood pressure machine and his finger out for the pulse ox machine. 

Through all of the questionairres about medical history and food allergies, no one seemed to know much of SPD.  I found myself explaining why he doesn't eat, I received the "we'd prefer that you not co-sleep" (although I climbed in the bed and snuggled him anyway), and I was asking each shift to make sure that they let me explain things to him before they just come in and take vitals etc.  So why isn't the medical community more aware of SPD?  It is a relatively new diagnosis and is still not accepted by many in the medical community.  It isn't that the experts don't believe it exists, but they don't believe there is enough research and evidence to make a stand-alone diagnosis.  They feel that SPD is simply a symptom of a another disorder such as Autism, and by diagnosing SPD by itself you may be missing that underlying problem.  If you tell a nurse, physician or any person in the general public that a child has autism, asperger's or is on the autism spectrum - they are inclined to immediately assume that the child will be more sensitive to stimuli, environmental changes, touch, sound etc.  But in reality - those sensitivities are a component of SPD as much as they are the other disorders, they just aren't recognized as such.  With more research, this may change, but until then it is my responsibility to speak up when something relates to JC and his special needs.... just as any mother would do for her child.