Archive for January, 2011

Love isn’t BLIND it’s DEAF!

My 13 year old daughter announced to me the other day that she is in love!  As a young girl once myself, (many, many years ago, ) I remember the joy of first love, the innocence, the caring how you look, and the giddiness involved.  Marie showed me a picture of him. His name is Jose and he recently moved to their school from Guatemala.  Cute kid. He had already accomplished one thing…motivated Marie to go to school every day.  She also dutifully did her homework, because if she didn’t she would have to sit with the teachers at lunch rather than…Jose!!!!

When I came home from work today, my husband was exceptionally glad to see me and he said he needed help. Marie had come home from school and asked him to pick Jose up and bring him to our house.  They had been “calling each other” all afternoon.  The major problem is, both are profoundly deaf. Jose was calling her on his house phone.  Marie was desperately trying to text him on her cell phone.  A child of technology and a certain standard of living, Marie could not understand why Jose did not have a cell phone.   Jose called time and time again.  Exasperated, Marie asked me to “talk” to him.  As with Marie’s speech, his words were indistinguishable.  I explained to her that I could not understand what he was saying.  Marie came up with the bright idea of calling my other daughter, Dinora, who is also from Guatemala.  “She talk same. Understand him!”  Marie signed.  I laughed and told her she spoke Spanish but would still not be able to understand him.  My husband just shrugged. He had not been able to explain it to her either.

Marie begged for me to just go to his house to pick him up.  She knew where he lived, she insisted.  He lived in “next town”.  The “town” we live next to is the second largest city in our state.  She proudly drew a picture of 2 cross streets and a house on the corner, next to a tree.  The house had the number 123 on it.  “There”, she signed, “Map same Judge Judy.”  She was, of course, referring to the Judge Judy television show where litigants would demonstrate on a map, very similar to the one she drew, regarding how a car accident had happened.  “What name street?” I asked.  She looked at me and signed “123”.  “No, what NAME street?” I signed back. She didn’t know, but said the map was good and it would show us how to get to his house.  My husband and I burst out laughing hysterically, hurting Marie’s feelings. We explained how we would have to go street to street throughout the enormous city looking for all of the houses with “123” on them until we found Jose’s.   She did not appreciate the humor in it.  She asked to me to call his mom, which I tried to do.   However, Jose repeatedly answered the phone, wanting to “talk”  to Marie.  So, there were the 2 of them, both “talking” to each other for over an hour, neither one aware of what the other was saying.  Perhaps that is just as well…

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?

Her PTSD caused MY PTSD

I like to write breezy, optimistic posts.  I am generally a breezy, optimistic person.  However, I also write this blog for my own stress relief. so readers are going to have to bear with me for this one.

Marie had a bad day at school yesterday.  (Well, to say “bad day” is akin to saying wave when it was really a tsunami.)  Marie had been doing very well this past year and we had not an ambulance run for a post traumatic stress episode since last February!  She still had her moments of outbursts in school for which she was gently placed in “the quiet room”, but she had always managed to calm herself down without a need for restraining or other interventions.  However, springtime is the anniversary of her removal from her birth mom. Also, we had spent the past few months finally discussing the abuse that had happened 5 years ago, including going to the police station and filing a report. (A warrant for the arrest of one of the men who had abused her had been issued, but the man had fled the country.)

Although we had always known that Marie was abused, it was only recently that she has felt comfortable discussing the details.  Whether she only recently remembered them, or whether she only recently felt confident enough to tell is in question.  Her pediatrician recently referred us to a center which has a wonderful program for individuals with disabilities and children who have been sexually abused, but I had not contacted them yet as I was waiting for a copy of the police report, (a requirement for service.)  I fear my negligence at doing so right away contributed to Marie’s PTSD episode yesterday.

By the time I arrived at the school, she had been actively violent and dissociative for over an hour.  She was not being restrained, but was in the “quiet room”, not so quietly destroying it.  The staff watched from the doorway as she ripped tape off the blackboard (which had been taped with foam so as not to be harmful during a tantrum.)  She threw the tape, then pieces of the foam and the blackboard, at the doorway.  When she is like this, she has super human strength and could level any person with one swoop of her hand, which is why the staff was wisely standing in the doorway.  I stepped into the room to try to calm her, but she did not  recognize me. She came at me wild eyed, swinging and spitting.  (Think Linda Blair in “The Exorcist.”) I retreated as her violence escalated, at which point 911 was called.  By the time the police, ambulance and firemen arrived she had wrapped the masking tape tightly around her wrists to stop her circulation and had gone over and ripped the radiator cover off the wall.  It took 8 men to subdue her, and several of them were kicked, bitten and punched. They had great concern because she was spitting at them, as blood borne pathogens are the scourge of all medical personnel.  (HIV?  Hepatitis?)  Even as I was warning them not to, they tried to put a mask on her face.  She has been through this before, and she is an expert at biting down on the mask, chewing on it and has at least one time, almost swallowed it. As she began to do so, they replaced it with a towel over her face.  They used towels to restrain her arms and legs which were swinging with great force in all directions.  She was then placed on the ambulance stretcher and whisked off to the ambulance.  All this time, she was screeching with a guttural sound that one would associate with the depths of hell.

They asked me to follow the ambulance to the hospital, which felt surreal, like a high speed video game. It’s a good thing I have nerves of steel because we drove at high speeds through the streets bypassing red lights.  At one red light, a car was in the middle of the road and the ambulance went around it on the left while I went around it on the right, just like you see on those high speed chases in movies. But it was me, a little old 55 year overweight mom, in the driver’s seat!  If it weren’t for such a serious situation, it almost would have been fun.

At the hospital, it was routine.  They knew her there.  First it was the transfer from the ambulance stretcher onto the emergency room stretcher. This move takes a great precision as the hospital restraints had to be transferred onto her arms and legs.   If this was not done quickly, an arm or a leg would become loose and would go flying for a swift, hard kick or hit. One worker did not duck and he was kicked on the side of the head. Once on the hospital stretcher, everyone backed away as the towel was removed from her face, and her spitting began anew.  The security guards donned masks with clear shields on them, making it look more like a science fiction  movie.  She was thrashing about, banging her head on the side of the stretcher.  They put a padding on the side, which she quickly grabbed onto with her mouth and began to bite through.

Fortunately, she was evaluated quickly due to the distress she was in.  She was given a shot of a tranquilizer, and her fighting and spitting quieted.  The wild look was gone from her eyes.  She calmed down, blinked and huge tears began to roll down her cheeks. She looked around and was confused as to where she was. Her eyes pleaded with me to ask the doctor unhook the restraints as she can only talk with her hands because she is deaf.  Because she was calm, they unhooked one hand so she was able to finger spell what she wanted.  She spelled out p-o-s-i-c-l-e! (She had obviously been to this emergency room several times before and she knew what they had to offer.)  She signed her throat hurt but she didn’t know why.  (Maybe from all the SCREAMING she had done for the last hour?)

She was calm and her restraints were completely removed.  A psychiatrist was to evaluate her, and I asked for a sign language interpreter. Five hours later she was evaluated.  She proceeded to tell the doctor that in school she has a hard time controlling her anger inside and when she gets angry over the least little thing she cannot control the anger and she explodes.  He asked why she was so angry and she thought about it a minute before she proceeded to tell him the story of how she was angry at her birth mom because she let men have sex with her, and she was angry at the men for hurting her.  This was the interpreter’s first time on the job, and she expertly interpreted all of the sordid details.  When Emily had finished with the story and the doctor left the room, the interpreter stepped outside the room.  She was clearly shaken, trying to hold back tears.  “I didn’t realize how difficult it would be to do this!” she said.  I reassured her that we use an interpreter often and this is the first time this difficult subject has come up.  Next time maybe she’ll interpret for a wedding or a school play, definitely something less difficult.

Because PTSD can happen at any time, it is unpredictable.  The doctor did not recommend hospitalization.  (Marie LOVES when she is hospitalized…all the popsicles she can eat, doesn’t have to go to school or do chores, and everyone dotes on her because she is so adorable.  What’s not to like?)  We did discuss getting her into counseling with the center for abuse, and a referral was made.  Because there are no counselors or social workers in our area trained in American Sign Language, Marie will have to have an interpreter for counseling sessions, not the preferable manner, but for now it is the only way.

Marie was in good spirits when we left the hospital.  She was skipping and smiling.  She had no memory of what had happened before she came to the hospital, and I was glad of that.  I have that memory, though, and I get flashbacks of the screaming and the cold, wild eyes.  Her PTSD has caused my PTSD!

Look at All Dem Dere Brown Babies!!!

If you are a parent,  you have probably experienced those situations where your children have embarrassed you by what they say.  I have had many long years of embarrassment, including the following  3 examples:

When Steven was 4 years old, I went with him to a local facility which housed infants and toddlers who were HIV positive to pick up a new foster child.  It was a non-descript looking house which fit in well with the neighborhood.  When we walked in the front door into the large living room, the room was full of beautiful children, all playing with toys, reading a book with a staff member, or toddling over to say hello to us.  Steven, who is quite unused to group situations, took one look at the crowd and said out loud, “Holy Sh_t!  Look at all dem dere brown babies!!!!”  He was right as all of the children were minorities. (This is not to give the impression that minority children would be most at risk for AIDS, it is just that minority children are more difficult to place in foster homes.) The staff all politely laughed at his remark, especially because he did not take into account that he himself was “brown”.  (Which begs the question…if a bi-racial child is raised by Caucasian parents, doesn’t he look in the MIRROR?)

On another occasion, I took Francis to the zoo when he was about 5.  Francis is severely visually impaired and cannot see clearly beyond a few feet, although he can see fuzzy details.  While walking in the zoo, a mom and a dad were strolling along with a child in their stroller.  He was wearing a brown snowsuit, and he had a huge, full head of brown curly hair.  As we passed by them, Francis said “MOM!  MOM!  They’ve stolen one of the animals from the zoo!!!”  The parents looked aghast at his remark, and I remember making some comment about him not seeing well as I ushered Francis quickly away!

The most recent incident happened when Marie was 10.  She is profoundly deaf and normally a very compassionate young lady.  However, we saw a gentleman at the mall who was without legs and an arm.  She stared and pointed excitedly and in her innocence asked me what happened to him.  I gave her my spiel that it is not nice to point and stare because it hurts the person’s feelings.  That God makes all kinds of people and a lot of people have disabilities, just like she is deaf.  I told her the best thing to do was just be friendly, smile, and say hello, not stare.  We were signing all of this in American Sign  frenetically back and forth. We looked up from our signing to smile at the gentleman, only to find him and his friend pointing and staring at US!  We both smiled at him, and then rapidly walked off in the other direction!

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…

The Joys of Parenting (?)


Parenthood can be a lot of work at times, especially with children with disabilities, but I always prefer to see the joyful side of parenthood for the following reasons:

  1. The sight of a sleeping child, no matter what age, melts my heart.  We always take pictures of our children sleeping on Christmas Eve, so I have a collection of how their sweet sleeping faces look as they age.  It never ceases to affect me and I smile at each and every one.
  2. When a child is in a school performance, from pre-school graduation, school plays, award ceremonies, right up to college graduation my pride soars.  Tears always come to my eyes as my well dressed for the occasion child “does his/her thing.”  Each child’s “thing” may be different…Steven, especially in the early years with his sensory integration deficit, would actually hide under the chair, (or the pew in church as was the case when he was supposed to make his first communion.)  Francis would walk slowly looking down due to his visual impairment, and he would be hesitant about who to go to until he got close enough to see them.  Dinora would “strut her stuff”, with us all excited at her accomplishment.  Angel would put on his best “game show host” face and wave to the audience as if the event was entire for him.  Marie would…well, I’ll save that for a later blog because that is a real interesting story!
  3. Each time a child learns a new skill, I am overcome with joy at their accomplishment.  Not just the learning to walk or talk part, but the entire route to independence they take.  My 2 oldest live on their own, have jobs and pay their own bills.  Just the fact that they can pay their own bills causes me to leap in the air with happiness.
  4. Sitting around the table eating dinner together usually, (depending on how the kids are getting along,) fills me with the peace.  I like sitting at the head of the table with my husband at the other end, and the kids in the middle.   Holidays and special occasions are always extra nice when all 5 children are there.
  5. I feel a happiness only a mother could feel every time a child presents me with a gift they have made for me. Steven made me a wonderful 2 foot tall vase shaped like and alligator, (his favorite animal.)  What mother wouldn’t be thrilled to receive an alligator vase?  The color even matches the colors in my kitchen!  Angel’s, who is 15 years old, has a child-like “part” that makes me jewelry.  He presents it to me with great flourish,  It is always gaudy and  made of huge plastic “crystal” beads.  When I wear it, I feel like I am wearing a chandelier, but I wear it with pride, (until I can get in my car alone and take it off on my drive to work.)
  6. Taking the children out for an activity like bowling, horseback riding, or go cart riding allows me to have an excuse and have fun like a kid myself.
  7. The times the children prepare breakfast for me is especially joyful, (even though the eggs are tough, the toast is burnt, and the tea has no sugar.  Plus, the kitchen is a huge mess!) I always look on the bright side, and even if my eggs aren’t sunny side up, I am sunny inside!
  8. The biggest joy I get out of parenthood is the fact that I do not have time to clean the house…taking care of all of the children’s special needs, all of the therapy, counseling, medical, extra-curricular activities does not leave me any time to clean!  We’ve long ago learned to settle for a “picked up house”, not a spotlessly clean house, (or even a “pretty clean” house.)  I feel no guilt at all.  I would much rather be spending time helping my children than washing the kitchen floor.  I will never lay  when I lay on my deathbed I wished I’d kept my house cleaner!  There are so many more important things to do with the kids, so, sorry, don’t expect my house to be real clean!  Ah, the joy of no housework!!!!

Parenting is a lot of fun and can be filled with joy.  I try to always focus on the positives and downplay the negatives.  It is the only way I remain sane!!!!

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