Just Another Day in the Life of a Special Needs Parent

My 11 year old adopted son, E, has severe sensory integration dysfunction.  It is so bad that it affects his behavior and it makes our lives very difficult. One of his many challenges is his tactile defensiveness;  he is overly sensitive to touch.  As a result, he is absolutely terrified of needles because he expects the pain of the injection to be far greater than it actually is.

EVERY time we go see a doctor of any type, his first question is "will I have to have a blood test?"   We were able to manage him when he was small and could hold him down when he needed to get his vaccinations, but now he  weighs 135 lbs, is almost 5 feet tall and has the strength of 10 men when he gets upset.

His needle phobia has not been a problem until last week.  He went for his annual physical and his pediatrician wanted him to get 2 vaccines.  Even though we love his doc and he has known E for 10 years, he still doesn't really know what it is like to live with a kid like E.    He had no idea how hysterical E would become at the mere prospect of getting these vaccines.

E announced that he was going to the bathroom.   In "E speak", I knew this to mean that "I am going to get the hell out of this office before anyone has a chance to stick me with needles".    And that is exactly what happened.  He ran out of the office before I could get up and prevent that from happening.  I figured he went down to our car which was parked a block away.  When he wasn't there, I calmly went back to the doctor's office and announced that I didn't know where my son was.  These types of things happen almost every day in our lives, so after 10 years of this, my husband and I are just too exhaused to get excited about it.  He had no money and was 15 miles from home and he wasn't going to walk, so I figured he would come back, eventually.

In the meantime, several of the nurses and the head doctor, who were quite alarmed, looked in all the treatment rooms to see if he was hiding.  E LOVES to hide.  When he was nowhere to be found, they all started freaking out, asking me if I wanted them to call the police.  I just stood there calmly;   it was just "business as usual" in my life.  E did return and agreed to get a nasal flu shot but not the vaccines.  Eventually, he said he would get the vaccines if they would numb the area first.  Unfortunately, they didn't have any topical numbing agent.  I told the nurses to trick him by lying to him that they had a numbing agent but it didn't work.    One of the nurses was going to hold him down.  This was a terrible idea since afterwards he would have probably trashed the doctor's office;  either by overturning furniture or pulling the paintings off the wall or worse.  I told her not to hold him.  At this point, the nurse told me she had no more time to dedicate to cajoling E into getting his vaccines, so we left.

He cried in the car for several minutes afterwards.  He didn't even get the shots, but just the thought of it was so upsetting to him that he cried.  It was difficult to be sympathetic but I did manage to acknowledge how difficult it must be for him to live with all his anxieties. 

Now we have to go back to get the doctor.  It is a 40 minute ride each way to the doctor's office and several more minutes to look for parking.  I HATE to pay to park, so I will spend several minutes looking for a free parking space which I do find, eventually.  The problem is that E hates to walk, so if my husband  comes with us, I can drop them off at the door and I can park a few blocks away.  I don't mind the walk, myself.  On that day, it was just E and me since it never occurred to me that E would need shots.  Ho hum!  Just another day!

Another parent called me a saint when I relayed a similar story to her.  He's my kid and I love him very much.  My husband and I have a very good understanding of all his challenges but we don't know how to help him, mostly because he won't let us.   Just recently, I decided he needed to go into residential care which would mean he would live somewhere else for 1-2 years.   His other fundamental problem is the trauma of being abandoned by his birth mother.  How could we abandon him and not feel terribly guilty?  So, we go on.  But we pay a very high emotional price to do so.

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