Posts tagged ‘emergency room’

What’s In My Purse?

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As the mother of children, especially children with disabilities, I have been a frequent visitor to emergency rooms. It didn’t take me long to realize that those hours spent W A I T I N G were tedious for my kiddo and myself. In fact, for my kiddos with ADHD, they could be dangerous. With Steven, he would open all of the drawers and fling the contents onto the ground, swing from the air hoses and climb on top of the curtain. He was generally uncontrollable in an environment that he saw as a playground and I saw full of dangers that would land him in an emergency room for a reason other than for that which we had come! I had a knot in my stomach and tears of frustration. The emergency room staff and I finally learned that the only examining room suitable for Steven was one for psychiatric patients…no drawers, no air hoses, no curtains to climb. That solved the problem somewhat…but the long wait was also a major issue. Visits to the emergency room often ran six, seven hours, and sometimes all night! What to do? What to do? What to do?

Alas, out of need emerged my “emergency room purse”:
*Extra copies of medical cards and social security cards; when under duress with a screaming child coming in with the ambulance, rummaging through my wallet for these items always seems problematic and adds to my stress.

* A written medical history for each child; remembering those pesky spelled medication names and listing hospitalizations and diagnosis are always nerve wracking, having them at your fingertips is priceless.

*Quarters and crisp dollar bills for the vending machines.

*Animal and peanut butter crackers along with some juice boxes so I don’t have to spend so MUCH at the vending machines. (Dispensation of food and drink dependent upon reason for visit to emergency room)

*Cell phone charger (hours waiting…games to play…people to call…need I say more?)

*A deck of playing cards, INVALUABLE for killing time, and also for great mother/child bonding.

*Manipulative toys
for kiddos with ADHD…nothing like having that coil to twirl or that Rubik’s Cube to solve.

*Extra diaper/underwear and pants unless the child prefers to go home in a hospital johnny. (My daughter, Marie, actually loves the hospital clothing and has a whole drawer full…starting from small sizes when she was young up to the adult sizes she wears now.)

*Chap stick; the rest of me may look like Frankenstein’s monster, but my lips will be smooth and pretty.

*A large print, best selling book for me to read; when a kiddo is sleeping, (YAY!) the lighting may be dim and my eyes may be teary, but large print has always served me well.

My life has been spent trying to remain sane while raising children who can be difficult. Emergency room visits are always stressful and my mitigating solution is the “going to the hospital” purse.

Not to be confused with my “going to the movies” purse…

An Expensive Bike Ride!

My 13 year old daughter who has ADHD, Post Traumatic Stress Disorder and is profoundly deaf, was riding her bike near our little vacation home in New Hampshire.  Our “neighborhood” has dirt roads and the cars drive very slowly.  One afternoon, a neighbor whom we barely knew came to the door.  He indicated Marie had been in a bike accident.  I ran out to follow him and learned she had hit a gravel patch and the bike slipped and fell out from underneath her.  Many people had gathered and she was screaming dramatically as she tends to do.  Because she is deaf and non-verbal, if she wants something she screams loudly and the neighbors mistook this for pain and had called an ambulance.  I got there just as they were putting her in the ambulance and she was screaming blood curdling screams.  One would think she was severely injured.  She was, however, petrified! With her ADHD and Post Traumatic Stress disorder she becomes completely unhinged any time she is restrained, and they had her restrained on a back board with a neck brace.

I followed them to the hospital where she continued to scream.  I requested they give her a dose of Ativan, which lessened the screaming a little.  I asked her where it hurt and she signed back in ASL alphabet with her restrained hand

that her neck hurt badly.  They did x-rays.  Then they did more x-rays at her bedside because even though she was still fully restrained, she had moved enough so that the first x-rays did not come out clearly. The x-rays showed no sign of neck injury.  She still complained tearfully that her neck hurt.  They sedated her further in order to do a CAT scan.  That came back showing no sign of neck injury.  The doctor finally thought it was safe to take the restraints off.  Off came the neck collar.  The crying stopped.  “Good!”  she signed, “Now my neck does not hurt anymore.”  The doctor looked at her neck and noticed that a too small child’s collar had been put on her and there was a huge red mark where the collar had been pinching her skin.  This child had not been hurt at all in the bike fall! She was injured by a too small neck brace! Although frustrated at what we had been through, I was at least glad it was over and she was okay.  However, I was not very glad when the bill for the emergency room came.  I have been paying in installments on the $3200 bill uncovered by her state Medicaid insurance program.  That is a lot of money for a bike ride!

Random Thought on Life with Children with Disabilities

Thoughts Regarding Life with Several Children with Disabilities

  • When you have several people in your family, (ours has 6 at home,) put names on toothbrushes.  They are only available in so many colors…
  • Taking multiple pills is easier if they are placed in a little plastic cup.  Using a hand is not always the safest way to guarantee they will all get into the mouth. (Before I discovered this, I was finding pills here, there and everywhere, especially between the couch cushions.)
  • Keep extra pills and a bottle of water in your car in case you are delayed and a child would miss a dose.
  • Even though it might be easier, do not schedule doctor’s appointments at the same time for more than one child.  I have learned that there is a direct correlation between the difficulties to be discussed about one child with the doctor and the misbehavior of the other child.  I also usually take the child with the appointment out to eat afterwards for some “quality time”.  This seems to encourage good behavior at the doctor’s.
  • Don’t stress out over things that are unimportant in the scheme of things.  I try to clean house, but rarely have time to do a great job.  I don’t care.  I try to have a nice, family meal every night, but only succeed three or four nights a week.  I don’t care.  I try to dress my children nicely for the holidays, but they invariably pull the new clothes off to wear more comfortable ones.  I don’t care.  The house is not filthy and neither are the kids, and the kids are not starving or overweight.  My expectations are low so I am always pleased to meet them.  If I am able to exceed my expectations, I am thrilled beyond belief.
  • Find time for yourself and your significant other (if you have one.)  This relationship must be nurtured if he/she is expected to nurture the children.  Stressed out parents affect patience levels.  My children have always had a bedtime of 9:00 pm regardless of age.  They can watch tv, talk on their cell phones, read or do schoolwork, but quiet time in our house is observed at 9:00 pm.  This guarantees quiet time for the parents.
  • Take a few days off without the children.  Again, the parental relationship needs to be primary.  The statistics of divorce among families with children with disabilities is staggering.  I work hard at not being that statistic.  Going away without the children takes a great deal of planning, but the reward is a stress free weekend.  With my family, this is also costly because I need to arrange and pay for supervision for 3 separate children.  Again, it is less costly than divorce.
  • I make sure the children pick up the dog poop in the backyard BEFORE I rake the leaves.  (I didn’t do this once and boy was I sorry!!!)
  • I drive a mini-van with 4 bucket seats and a back bench seats.  This leaves 3 separate bucket seats so the children don’t have to sit directly next to each other and each one has a window seat. Rides have been quieter since I bought this car.
  • We try to live within our means financially.  No costly trips to restaurants.  No plays, concerts or other costly entertainment.  I buy clothes at 2nd hand stores and grocery store brand food. It is stressful enough worrying about the children without adding financial worry.
  • You cannot yell at a deaf child.  They will just shut their eyes and they cannot see you signing the angry words!

I find the humor and happiness in life:  watching my daughter  who is deaf in her dance class with a big grin on her face,  joking with my son who has dissociative identity disorder that he needs to check with “his people” before he makes a decision,  watching my 17 year old son with Aspergers when he is holding a wriggling snake and describing everything you’d ever want to know about it, and watching my husband cook supper with my daughter.  She used to be a very picky eater, but now she eats everything she helps cook.  Who knew?

Pain is in the Eye of the Beholder…Part 2

(I apologize in advance for this post not being in my usual upbeat prose, but the topic is a serious one.  Please feel free to click away…)

I mentioned in Part 1 that 2 of my sons have a high pain threshold, for two very different reasons.  Steven does not feel pain because his “electrical wiring” is messed up as he was born to an alcoholic birth mom who also used heroin and cocaine.  He has a severe sensory integration deficit where, basically, light touch hurts and pain doesn’t seem register in his brain.  It has made for an interesting childhood.

Steven has more stitches in him than Frankenstein, and we have been to our local emergency room so often that they have a cubicle reserved for us.  (In the interest of full disclosure, I have to admit that the latter part of that statement is exaggerated!)  An active boy, he would often fall off of his bike and get right back on without any acknowledgement of an injury.  The only way I would know would be when he would come home at night and a portion of his clothes, a sleeve or a pants leg, would be covered in blood.  Upon inspection, I would find the culprit: a long gash requiring stitches. Due to the lateness of the hour, all of the walk-in clinics would be closed, so off we would go to the emergency room.  (His last gash was from under his knee down to his ankle.)  The ironic thing is, because of Steven’s sensory integration deficit whereby light touch hurts, he would scream in agonizing pain when they would put the Novocain needle in.  A few times they allowed him to choose to have the stitches done without Novocain. On occasion, they have had to sedate him in order to put the Novocain in.  Steven has also broken a bone in his foot and his hand, noticed only when he was walking or using his hand oddly. Through his school program, he has volunteered for several years at a reptile education center.  He has been bit several times by the snakes. but would keep on doing his job, wrapping his arm or hand in a towel so the blood wouldn’t get their tanks all dirty.  As a young adult, he has learned to manage this unique quality of his, and he has not been injured in well over a year.  (Knock on wood.)  Of course, he has also become much more sedate…preferring video games and tv over BMX bike jumps! His wild days of adventurous antics are diminishing, along with his injuries.

Angel, who is fifteen years old now, has a very different and complicated reason why he does not feel pain.  He was abused so badly as an infant and toddler that he developed Dissociative Identity Disorder.  When he was being abused, he would develop an alternate personality which would not feel the pain.  Even though he is safe from harm now, the abused personality continues to do his job and protect him from pain.  The best example of this is the fact that Angel has had persistent problems with ear infections, but they could only be diagnosed by a doctor because he would never acknowledge the pain so we didn’t know they were infected.  One morning when I went to wake him up, his pillow was covered with blood.  When he sat up, blood was dripping out of his ear.  I called the ear doctor who saw him immediately.  Although Angel was about ten when this happened, and he  jumped happily up into the exam chair like a toddler, swinging his legs back and forth while he sat.  “Hi, Doc!” he said excitedly.  “Can I play with your thingy there that listens to hearts?” he asked as he reached for the stethoscope.  The doctor explained he needed to use the device to look in his ear. “Cool” Angel said.  “If you look in there can you see all the way to the other side of my head?” he joked, while he giggled.  The doctor looked in his ear and pushed his stool back in amazement.  He informed me that Angel had a fractured ear drum from what looked to be an extremely bad ear infection.  The doctor looked at Angel and back at me.  He said it was unbelievable.  Not only is an ear infection painful, but an ear drum ruptured as much as his was would cause excruciating pain. He said he had grown men crying like babies when they came in with an injury like this. And there was Angel, grinning and swinging his legs back and forth in the examination chair, just like a happy toddler, (one of Angel’s personalities.)  On the way out of the office,  he even asked if he could get a sticker, and he chose the Sesame Street ones!  The doctor just shook his head in amazement!

The major downside to Angel’s situation, besides the obvious problem that it is difficult to determine if he is injured, is that a part of him DOES feel the pain. Because he does not acknowledge it generally, it goes untreated and the part that does feel the pain does so unnecessarily.  This may be very hard to understand, and possibly unbelievable, but the fact is, the part that feels the pain is very resentful that the “others” are safe and seem to lead a happy life.  After many years of counseling and better understanding his condition, Angel and I see the interactions between his “selves”.  The funny part is, his painful self will actually sabotage the other parts if they are doing something good or if they own something of value. Through counseling, he has been able to be very successful in school.  (His “smart parts” attend, and they would get a lot of attention for their good work.) As if jealous, several class projects were found broken in a heap on the floor the morning he was to have turned them in, and research papers would find themselves mysteriously erased from the computer.  Angel also had two laptop computers “stolen” in the middle of the  night from his bedroom. He wouldn’t tell me for a week or so, so I couldn’t search for them.  We could never figure out where they went!  He was sure someone was sneaking into his bedroom at night, but I suspected his part that had been abused was throwing them away.  We were never able to prove it because the garbage had days ago gone for its final journey to the dump.  I finally bought a lock and locked the laptop onto the desk.  A few days later, the laptop wasn’t stolen, but the keyboard was smashed to pieces!  Angel was also the proud owner of an IPhone that kept disappearing.  For days, even weeks, we couldn’t find it.  Then, it would pop up under the base of a living room lamp, in the bottom kitchen drawer under the towels, and once even IN a sock in the BOTTOM of the sock pile. Angel does not remember ever doing anything with his phone of this nature, but he does have a problem with memory lapses.  For a long time, even though he is fully aware that he has “parts”, he has denied the existence of this vengeful part because he could not imagine himself doing anything detrimental to his prized technology.  A few too many times of having his phone disappear, though, has convinced him that this part is lurking in the background…

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